Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey / Catherine A BENT in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2282-2296 Titre : Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey Type de document : Texte imprimé et/ou numérique Auteurs : Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.2282-2296 Langues : Anglais (eng) Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey [Texte imprimé et/ou numérique] / Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur . - p.2282-2296. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2282-2296 Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

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

'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'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

Parents’ experiences of an early autism diagnosis: Insights into their needs / Aspasia Stacey RABBA in Research in Autism Spectrum Disorders, 66 (October 2019)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 66 (October 2019) . - p.101415 Titre : Parents’ experiences of an early autism diagnosis: Insights into their needs Type de document : Texte imprimé et/ou numérique Auteurs : Aspasia Stacey RABBA, Auteur ; Cheryl DISSANAYAKE, Auteur ; Josephine BARBARO, Auteur Article en page(s) : p.101415 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Parents  Parental experience  Early diagnosis  Coping  Support Index. décimale : PER Périodiques Résumé : Background Little research has directly examined parental needs following their child’s early diagnosis of autism. Method The experiences and support needs of 13 mothers and fathers who had a young child diagnosed (<36 months) were explored via a series of semi-structured interviews and a focus group. Results Thematic analysis identified four key themes: emotional response to diagnosis, ability to manage the uncertainty post-diagnosis, resourcefulness, and experiences of sharing the diagnosis. Conclusions Parents highlighted that receipt of an early diagnosis triggered an array of emotions, which influenced their coping. Charting parents’ lived experiences following an early diagnosis provides valuable insights that have important implications for the development of resources and supports for families at this time. En ligne : https://doi.org/10.1016/j.rasd.2019.101415 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=404 [article] Parents’ experiences of an early autism diagnosis: Insights into their needs [Texte imprimé et/ou numérique] / Aspasia Stacey RABBA, Auteur ; Cheryl DISSANAYAKE, Auteur ; Josephine BARBARO, Auteur . - p.101415. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 66 (October 2019) . - p.101415 Mots-clés : Autism spectrum disorder  Parents  Parental experience  Early diagnosis  Coping  Support Index. décimale : PER Périodiques Résumé : Background Little research has directly examined parental needs following their child’s early diagnosis of autism. Method The experiences and support needs of 13 mothers and fathers who had a young child diagnosed (<36 months) were explored via a series of semi-structured interviews and a focus group. Results Thematic analysis identified four key themes: emotional response to diagnosis, ability to manage the uncertainty post-diagnosis, resourcefulness, and experiences of sharing the diagnosis. Conclusions Parents highlighted that receipt of an early diagnosis triggered an array of emotions, which influenced their coping. Charting parents’ lived experiences following an early diagnosis provides valuable insights that have important implications for the development of resources and supports for families at this time. En ligne : https://doi.org/10.1016/j.rasd.2019.101415 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=404

'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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?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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