"We go through trauma": South Asian parents' experiences of autism diagnosis and early supports for their autistic children in Australia / Alexandra AULICH ; Catherine BENT ; Christos CONSTANTINE ; Kathleen FRANKS ; Nilushi GOONETILLEKE ; Cherie GREEN ; Rabia IJAZ ; Kanisha PATEL ; Helen SAID ; Sarah WOOD ; Kristelle HUDRY in Research in Autism Spectrum Disorders, 114 (June 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 114 (June 2024) . - p.102408 Titre : "We go through trauma": South Asian parents' experiences of autism diagnosis and early supports for their autistic children in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Alexandra AULICH, Auteur ; Catherine BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie GREEN, Auteur ; Rabia IJAZ, Auteur ; Kanisha PATEL, Auteur ; Helen SAID, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur Année de publication : 2024 Article en page(s) : p.102408 Langues : Anglais (eng) Mots-clés : Autism  Participatory research  Migrants  Parent experiences  Early intervention Index. décimale : PER Périodiques Résumé : Introduction Growth of the Australian South Asian migrant community has surged over the last decade. Yet we have minimal information about migrant South Asian parents' experiences of raising an autistic child in Australia. This participatory research informs the issue through reporting first-hand accounts of accessing an autism diagnosis and receiving early supports for South Asian parents and their autistic children living in Australia. Methods Parents from India, Pakistan and Sri Lanka (n = 13) were interviewed in their preferred language. During interviews, parents were asked about their experiences of the diagnostic process and navigating early supports for their autistic child. Interviews were analysed using reflexive thematic analysis. Results Parents described experiencing myriad challenges to accessing early autism supports, including limited knowledge, funding issues, lengthy waiting lists, and poor-quality clinicians. They also reported struggling to accept their child?s diagnoses and facing judgement from within their community. Unlike other migrant Australian communities, this group of parents did not describe obtaining community-specific supports and often navigated their journeys alone. These cumulative challenges impacted parents' mental health. Yet, parents also described proactively seeking as much support as possible, preferring goal-based, intensive, behavioural early interventions. Discussion and implications Clinicians should be aware that families from particular migrant/cultural minority groups may be more isolated than others, and consider how best to support a sense of community belonging in other ways. That these parents expressed preference for intensive, behavioural autism supports also highlights the diversity of service-related views and desires in the autistic and autism communities. En ligne : https://doi.org/10.1016/j.rasd.2024.102408 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] "We go through trauma": South Asian parents' experiences of autism diagnosis and early supports for their autistic children in Australia [Texte imprimé et/ou numérique] / Alexandra AULICH, Auteur ; Catherine BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie GREEN, Auteur ; Rabia IJAZ, Auteur ; Kanisha PATEL, Auteur ; Helen SAID, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur . - 2024 . - p.102408. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 114 (June 2024) . - p.102408 Mots-clés : Autism  Participatory research  Migrants  Parent experiences  Early intervention Index. décimale : PER Périodiques Résumé : Introduction Growth of the Australian South Asian migrant community has surged over the last decade. Yet we have minimal information about migrant South Asian parents' experiences of raising an autistic child in Australia. This participatory research informs the issue through reporting first-hand accounts of accessing an autism diagnosis and receiving early supports for South Asian parents and their autistic children living in Australia. Methods Parents from India, Pakistan and Sri Lanka (n = 13) were interviewed in their preferred language. During interviews, parents were asked about their experiences of the diagnostic process and navigating early supports for their autistic child. Interviews were analysed using reflexive thematic analysis. Results Parents described experiencing myriad challenges to accessing early autism supports, including limited knowledge, funding issues, lengthy waiting lists, and poor-quality clinicians. They also reported struggling to accept their child?s diagnoses and facing judgement from within their community. Unlike other migrant Australian communities, this group of parents did not describe obtaining community-specific supports and often navigated their journeys alone. These cumulative challenges impacted parents' mental health. Yet, parents also described proactively seeking as much support as possible, preferring goal-based, intensive, behavioural early interventions. Discussion and implications Clinicians should be aware that families from particular migrant/cultural minority groups may be more isolated than others, and consider how best to support a sense of community belonging in other ways. That these parents expressed preference for intensive, behavioural autism supports also highlights the diversity of service-related views and desires in the autistic and autism communities. En ligne : https://doi.org/10.1016/j.rasd.2024.102408 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

"What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia / Jodie SMITH in Research in Autism Spectrum Disorders, 108 (October 2023)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 108 (October 2023) . - p.102227 Titre : "What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Jodie SMITH, Auteur ; Alex AULICH, Auteur ; Catherine A. BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie C. GREEN, Auteur ; Patricia LEE, Auteur ; Emily MA, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.102227 Mots-clés : Autism  Participatory research  Migrants  Parent experiences  Early intervention Index. décimale : PER Périodiques Résumé : Background Parents should be central to early supports for their autistic children, with parent involvement in and satisfaction with supports influencing child outcomes. Migrant parents likely experience different barriers to navigating and participating in early supports for their autistic children, but we have limited data here. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with 19 migrant Chinese parents of autistic children about their experiences of the diagnosis and early intervention (EI) process. Interviews were conducted in home languages by other parents. We analysed data using reflexive thematic analysis. Results Parents described myriad obstacles to accessing early supports with many related to being a Chinese migrant in Australia. Parents reported difficulties accepting their children?s differences, faced language barriers, experienced stigmatisation/discrimination, and had limited knowledge of autism supports/systems. Funding issues, limited availability of supports and poorly coordinated services were additional challenges. Parents described having little choice and control over supports, often unable to access culturally-specific services. Nonetheless, parents explained how dedicated they were to their children and effectively utilised informal networks to better access supports for themselves and their children. Accessing EI gave parents hope, providing them with specific goals and strategies. Conclusion It is recommended that professionals clearly communicate with migrant parents about autism and available post-diagnostic autism services/supports, including how to access these. Connecting parents with informal, community-specific services should especially be considered for migrant families. We recommend other potentially useful adaptations to better support migrant Chinese parents in navigating early supports for their autistic children. En ligne : https://doi.org/10.1016/j.rasd.2023.102227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514 [article] "What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia [Texte imprimé et/ou numérique] / Jodie SMITH, Auteur ; Alex AULICH, Auteur ; Catherine A. BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie C. GREEN, Auteur ; Patricia LEE, Auteur ; Emily MA, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur . - p.102227. in Research in Autism Spectrum Disorders > 108 (October 2023) . - p.102227 Mots-clés : Autism  Participatory research  Migrants  Parent experiences  Early intervention Index. décimale : PER Périodiques Résumé : Background Parents should be central to early supports for their autistic children, with parent involvement in and satisfaction with supports influencing child outcomes. Migrant parents likely experience different barriers to navigating and participating in early supports for their autistic children, but we have limited data here. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with 19 migrant Chinese parents of autistic children about their experiences of the diagnosis and early intervention (EI) process. Interviews were conducted in home languages by other parents. We analysed data using reflexive thematic analysis. Results Parents described myriad obstacles to accessing early supports with many related to being a Chinese migrant in Australia. Parents reported difficulties accepting their children?s differences, faced language barriers, experienced stigmatisation/discrimination, and had limited knowledge of autism supports/systems. Funding issues, limited availability of supports and poorly coordinated services were additional challenges. Parents described having little choice and control over supports, often unable to access culturally-specific services. Nonetheless, parents explained how dedicated they were to their children and effectively utilised informal networks to better access supports for themselves and their children. Accessing EI gave parents hope, providing them with specific goals and strategies. Conclusion It is recommended that professionals clearly communicate with migrant parents about autism and available post-diagnostic autism services/supports, including how to access these. Connecting parents with informal, community-specific services should especially be considered for migrant families. We recommend other potentially useful adaptations to better support migrant Chinese parents in navigating early supports for their autistic children. En ligne : https://doi.org/10.1016/j.rasd.2023.102227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514

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