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Auteur Elizabeth PELLICANO |
Documents disponibles écrits par cet auteur (30)
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'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion / Hannah RAPAPORT in Autism, 28-5 (May 2024)
[article]
Titre : 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion Type de document : Texte imprimé et/ou numérique Auteurs : Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; Ka?ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1305-1315 Langues : Anglais (eng) Mots-clés : attention flow monotropism quality of life wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527
in Autism > 28-5 (May 2024) . - p.1305-1315[article] 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion [Texte imprimé et/ou numérique] / Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; Ka?ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur . - p.1305-1315.
Langues : Anglais (eng)
in Autism > 28-5 (May 2024) . - p.1305-1315
Mots-clés : attention flow monotropism quality of life wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research / Jacquiline DEN HOUTING in Autism, 25-1 (January 2021)
[article]
Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.148-163 Langues : Anglais (eng) Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437
in Autism > 25-1 (January 2021) . - p.148-163[article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur . - p.148-163.
Langues : Anglais (eng)
in Autism > 25-1 (January 2021) . - p.148-163
Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia / Rozanna LILLEY in Autism, 24-7 (October 2020)
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Titre : Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Rozanna LILLEY, Auteur ; Mikala SEDGWICK, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1860-1873 Langues : Anglais (eng) Mots-clés : *Australia *First Peoples *Indigenous *Torres Strait Islander *aboriginal *attitudes *autism *cross-cultural *families *mothers Index. décimale : PER Périodiques Résumé : There has been almost no research done about autism in Aboriginal and Torres Strait Islander communities in Australia. This article is the first detailed report on attitudes to autism in these communities. Understanding attitudes to autism is important because they influence whether or not children are diagnosed, as well as the kinds of support autistic people are getting. Twelve families who lived in different parts of Australia were interviewed. They told us that there is a range of attitudes to autism in Aboriginal and Torres Strait Islander communities. These include negative ideas such as sometimes feeling shame associated with children's unusual behaviour, as well as feeling stigmatised and socially isolated. The negative attitudes reported may mean that some children are missing out on an autism diagnosis or being wrongly diagnosed with a different condition in these communities. They also included positive ideas such as the importance of looking after each other and of accepting autistic people and their differences. We can all learn from these positive attitudes. It will be interesting to know in future projects whether these accepting attitudes lead to better outcomes for autistic children and adults in these communities. This research helps us to understand how autism is thought about in different cultures and how attitudes impact diagnosis and support. It will also help people to plan supports that reflect what Aboriginal and Torres Strait Islander families actually want and need. En ligne : http://dx.doi.org/10.1177/1362361320928830 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431
in Autism > 24-7 (October 2020) . - p.1860-1873[article] Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia [Texte imprimé et/ou numérique] / Rozanna LILLEY, Auteur ; Mikala SEDGWICK, Auteur ; Elizabeth PELLICANO, Auteur . - p.1860-1873.
Langues : Anglais (eng)
in Autism > 24-7 (October 2020) . - p.1860-1873
Mots-clés : *Australia *First Peoples *Indigenous *Torres Strait Islander *aboriginal *attitudes *autism *cross-cultural *families *mothers Index. décimale : PER Périodiques Résumé : There has been almost no research done about autism in Aboriginal and Torres Strait Islander communities in Australia. This article is the first detailed report on attitudes to autism in these communities. Understanding attitudes to autism is important because they influence whether or not children are diagnosed, as well as the kinds of support autistic people are getting. Twelve families who lived in different parts of Australia were interviewed. They told us that there is a range of attitudes to autism in Aboriginal and Torres Strait Islander communities. These include negative ideas such as sometimes feeling shame associated with children's unusual behaviour, as well as feeling stigmatised and socially isolated. The negative attitudes reported may mean that some children are missing out on an autism diagnosis or being wrongly diagnosed with a different condition in these communities. They also included positive ideas such as the importance of looking after each other and of accepting autistic people and their differences. We can all learn from these positive attitudes. It will be interesting to know in future projects whether these accepting attitudes lead to better outcomes for autistic children and adults in these communities. This research helps us to understand how autism is thought about in different cultures and how attitudes impact diagnosis and support. It will also help people to plan supports that reflect what Aboriginal and Torres Strait Islander families actually want and need. En ligne : http://dx.doi.org/10.1177/1362361320928830 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 “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)
[article]
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
in Autism & Developmental Language Impairments > 6 (January-December 2021) . - 23969415211057681[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 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children / Aspasia Stacey RABBA ; Poulomee DATTA ; Emma DRESENS ; Rena WANG ; Lin CONG ; Ngoc DANG ; Gabrielle HALL ; Melanie HEYWORTH ; Wenn LAWSON ; Patricia LEE ; Rozanna LILLEY ; Emily MA ; Hau T T NGUYEN ; Kim-Van NGUYEN ; Phuc NGUYEN ; Chong Tze YEOW ; Elizabeth PELLICANO in Autism & Developmental Language Impairments, 8 (January-December 2023)
[article]
Titre : 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T T NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur Langues : Anglais (eng) Mots-clés : Participatory research community participation cultural and linguistic diversity autism impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518
in Autism & Developmental Language Impairments > 8 (January-December 2023)[article] 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children [Texte imprimé et/ou numérique] / Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T T NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur.
Langues : Anglais (eng)
in Autism & Developmental Language Impairments > 8 (January-December 2023)
Mots-clés : Participatory research community participation cultural and linguistic diversity autism impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 "Knowing That I'm Not Necessarily Alone in My Struggles": UK Autistic Performing Arts Professionals' Experiences of a Mentoring Programme / Eleanor BUCKLEY in Journal of Autism and Developmental Disorders, 52-12 (December 2022)
PermalinkLetter to the Editor: A possible threat to data integrity for online qualitative autism research / Elizabeth PELLICANO in Autism, 28-3 (March 2024)
Permalink'Maybe we just seem like easy targets': A qualitative analysis of autistic adults' experiences of interpersonal violence / Vicki GIBBS in Autism, 27-7 (October 2023)
PermalinkNumerical Estimation in Children With Autism / David AAGTEN-MURPHY in Autism Research, 8-6 (December 2015)
PermalinkParent perspectives on autistic girls’ friendships and futures / Felicity SEDGEWICK in Autism & Developmental Language Impairments, 3 (January-December 2018)
Permalink''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults / Rozanna LILLEY in Journal of Autism and Developmental Disorders, 53-3 (March 2023)
PermalinkPerception of shapes targeting local and global processes in autism spectrum disorders / Emma J. GRINTER in Journal of Child Psychology and Psychiatry, 51-6 (June 2010)
PermalinkPerceptions of social and work functioning are related to social anxiety and executive function in autistic adults / Alix WOOLARD in Autism, 26-7 (October 2022)
PermalinkPerspectives from parents of autistic children on participating in early intervention and associated research / Catherine A. BENT in Autism, 27-5 (July 2023)
PermalinkPoly-victimization of autistic adults: An investigation of individual-level correlates / Jennifer L. HUDSON ; Elizabeth PELLICANO in Autism Research, 16-12 (December 2023)
PermalinkA portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 / Lisa Marie EMERSON in Autism, 27-8 (November 2023)
PermalinkPredicting the financial wellbeing of autistic adults: Part I / Ru Ying CAI in Autism, 28-5 (May 2024)
PermalinkProcessing Slow and Fast Motion in Children With Autism Spectrum Conditions / Catherine MANNING in Autism Research, 6-6 (December 2013)
PermalinkPsychological models of autism: an overview / Elizabeth PELLICANO
PermalinkRecognition of Girls on the Autism Spectrum by Primary School Educators: An Experimental Study / Alana WHITLOCK in Autism Research, 13-8 (August 2020)
PermalinkReduced differentiation of emotion-associated bodily sensations in autism / Eleanor R. PALSER in Autism, 25-5 (July 2021)
PermalinkReduced differentiation of emotion-associated bodily sensations in autism / Eleanor R. PALSER in Autism, 26-5 (July 2022)
PermalinkReputation Management: Evidence for Ability But Reduced Propensity in Autism / Eilidh CAGE in Autism Research, 6-5 (October 2013)
PermalinkReputation Management in Children on the Autism Spectrum / Eilidh CAGE in Journal of Autism and Developmental Disorders, 46-12 (December 2016)
Permalink'Somali parents feel like they?re on the outer': Somali mothers' experiences of parent-teacher relationships for their autistic children / Jodie SMITH in Autism, 27-6 (August 2023)
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