Correction: ''They Were Saying That I Was a Typical Chinese Mum'': Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children / Jodie SMITH in Journal of Autism and Developmental Disorders, 53-3 (March 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1299-1299 Titre : Correction: ''They Were Saying That I Was a Typical Chinese Mum'': Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children Type de document : Texte imprimé et/ou numérique Auteurs : Jodie SMITH, Auteur ; Aspasia Stacey RABBA, Auteur ; Lin CONG, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Najeeba SYEDA, Auteur ; Emily MA, Auteur ; Julia WANG, Auteur ; Rena WANG, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1299-1299 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-022-05788-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500 [article] Correction: ''They Were Saying That I Was a Typical Chinese Mum'': Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children [Texte imprimé et/ou numérique] / Jodie SMITH, Auteur ; Aspasia Stacey RABBA, Auteur ; Lin CONG, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Najeeba SYEDA, Auteur ; Emily MA, Auteur ; Julia WANG, Auteur ; Rena WANG, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur . - p.1299-1299. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1299-1299 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-022-05788-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500

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

'I?m sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children / Aspasia Stacey RABBA in Autism, 29-4 (April 2025)  

Public ISBD [article]  inAutism > 29-4 (April 2025) . - p.1034-1046 Titre : 'I?m sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Aspasia Stacey RABBA, Auteur ; Jodie SMITH, Auteur ; Gabrielle HALL, Auteur ; Vanessa ALEXANDER, Auteur ; Kate BATTY, Auteur ; Poulomee DATTA, Auteur ; Emma GOODALL, Auteur ; Melanie HEYWORTH, Auteur ; Siobhan LAMB, Auteur ; Wenn LAWSON, Auteur ; Rozanna LILLEY, Auteur ; Katy REID, Auteur ; Najeeba SYEDA, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1034-1046 Langues : Anglais (eng) Mots-clés : autistic parents  autistic students  parent-teacher partnerships  participatory research  school experiences Index. décimale : PER Périodiques Résumé : Successful partnerships between families and schools can substantially improve children?s success in and out of school. Yet parents of autistic children often report considerable challenges with their children?s education. Almost no research, however, has examined autistic parents' own experiences. We, therefore, sought the views and experiences of autistic parents' interactions with schools for their autistic children. We conducted semi-structured interviews with 31 autistic mothers of autistic children engaged in education in Australia. We analysed the data using reflexive thematic analysis. Autistic mothers repeatedly expressed feeling like they were in a 'war zone', fighting ongoing battles to gain the necessary support for their autistic child and were 'sick of being [viewed as] the problem'. They also felt that their expertise as parents - and experiential expertise as autistic parents - was often overlooked or ignored. All of this had negative effects on their and their children?s mental health. Despite these negative experiences, autistic mothers who had experienced positive interactions with schools highlighted the importance of mutual respect in establishing and maintaining successful school partnerships and how their own determination and self-advocacy helped to foster these relationships. This research sheds light on the critical ingredients of effective home-school partnerships for autistic families.Lay abstract Good relationships between families and schools make a difference to children?s learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children?s mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators. En ligne : https://dx.doi.org/10.1177/13623613241297223 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552 [article] 'I?m sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children [Texte imprimé et/ou numérique] / Aspasia Stacey RABBA, Auteur ; Jodie SMITH, Auteur ; Gabrielle HALL, Auteur ; Vanessa ALEXANDER, Auteur ; Kate BATTY, Auteur ; Poulomee DATTA, Auteur ; Emma GOODALL, Auteur ; Melanie HEYWORTH, Auteur ; Siobhan LAMB, Auteur ; Wenn LAWSON, Auteur ; Rozanna LILLEY, Auteur ; Katy REID, Auteur ; Najeeba SYEDA, Auteur ; Elizabeth PELLICANO, Auteur . - p.1034-1046. Langues : Anglais (eng) in Autism > 29-4 (April 2025) . - p.1034-1046 Mots-clés : autistic parents  autistic students  parent-teacher partnerships  participatory research  school experiences Index. décimale : PER Périodiques Résumé : Successful partnerships between families and schools can substantially improve children?s success in and out of school. Yet parents of autistic children often report considerable challenges with their children?s education. Almost no research, however, has examined autistic parents' own experiences. We, therefore, sought the views and experiences of autistic parents' interactions with schools for their autistic children. We conducted semi-structured interviews with 31 autistic mothers of autistic children engaged in education in Australia. We analysed the data using reflexive thematic analysis. Autistic mothers repeatedly expressed feeling like they were in a 'war zone', fighting ongoing battles to gain the necessary support for their autistic child and were 'sick of being [viewed as] the problem'. They also felt that their expertise as parents - and experiential expertise as autistic parents - was often overlooked or ignored. All of this had negative effects on their and their children?s mental health. Despite these negative experiences, autistic mothers who had experienced positive interactions with schools highlighted the importance of mutual respect in establishing and maintaining successful school partnerships and how their own determination and self-advocacy helped to foster these relationships. This research sheds light on the critical ingredients of effective home-school partnerships for autistic families.Lay abstract Good relationships between families and schools make a difference to children?s learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children?s mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators. En ligne : https://dx.doi.org/10.1177/13623613241297223 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552

“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

'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)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 8 (January-December 2023) 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 [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

''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)  

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Reporting community involvement in autism research: Findings from the journal Autism / Diana Weiting TAN ; Laura CRANE ; Tori HAAR ; Melanie HEYWORTH ; Rebecca POULSEN ; Elizabeth PELLICANO in Autism, 29-2 (February 2025)  

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'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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The INSAR Community Collaborator Request: Using community-academic partnerships to enhance outcomes of participatory autism research / Patrick DWYER ; Dena GASSNER ; Melanie HEYWORTH ; Zachary J. WILLIAMS in Autism Research, 16-11 (November 2023)  

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?They Were Saying That I Was a Typical Chinese Mum? : Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children / Aspasia Stacey RABBA ; Lin CONG ; Poulomee DATTA ; Emma DRESENS ; Gabrielle HALL ; Melanie HEYWORTH ; Wenn LAWSON ; Patricia LEE ; Rozanna LILLEY ; Najeeba SYEDA ; Emily MA ; Julia WANG ; Rena WANG ; Chong Tze YEOW ; Elizabeth PELLICANO in Journal of Autism and Developmental Disorders, 53-12 (December 2023)  

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''We don?t make trouble'': Vietnamese parents' experiences of parent-teacher partnerships for their autistic children / Jodie SMITH in Research in Autism Spectrum Disorders, 103 (May 2023)  

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