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

"Individualisation is key": Autism intervention professionals' experiences of working with minority ethnic families in Australia / Kristelle HUDRY ; Alexandra AULICH ; Catherine BENT ; Christos CONSTANTINE ; Kathleen FRANKS ; Nilushi GOONETILLEKE ; Cherie GREEN ; Rabia IJAZ ; Emily MA ; Kanisha PATEL ; Helen SAID ; Rena WANG ; Sarah WOOD ; Jodie SMITH in Research in Autism, 126 (August 2025)  

Public ISBD [article]  inResearch in Autism > 126 (August 2025) . - p.202655 Titre : "Individualisation is key": Autism intervention professionals' experiences of working with minority ethnic families in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Kristelle HUDRY, Auteur ; Alexandra AULICH, Auteur ; Catherine BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie GREEN, Auteur ; Rabia IJAZ, Auteur ; Emily MA, Auteur ; Kanisha PATEL, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Jodie SMITH, Auteur Article en page(s) : p.202655 Langues : Anglais (eng) Mots-clés : Autism  Early Intervention  Participatory Research  Cultural Diversity  Linguistic Diversity Index. décimale : PER Périodiques Résumé : Introduction Early intervention (EI) professionals play an important role in supporting autistic children and their families. When families come from minority ethnic communities, the early autism journey is often more complex than for native-born families for caregivers and professionals alike. Whilst there is growing awareness about parents' experiences, we have little data from EI professionals on what can be done to improve the experiences, engagement and outcomes for these families. Here, we sought professional insights on their efforts to provide early autism supports for minority ethnic families, namely those from Chinese and South Asian backgrounds. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with EI professionals who had experience working with autistic children and their families from Chinese and South Asian backgrounds in Australia (n = 18). Data were analysed using inductive reflexive thematic analysis. Results Participating EI professionals described the challenge of developing a common language to talk about autism and supports with families, and often had different intervention priorities when compared to parents. They described observing parents' own unmet mental health and wellbeing needs, which they felt were compounded by shame and stigma associated with autism within their specific communities. Moreover, professionals relayed their powerlessness in effectively supporting parents' wellbeing due to a funding model focused solely on child goals. Participating professionals felt that the best way to work with families was to start by truly understanding the child, the parent and the family dynamics in order to tailor supports, as well as to encourage community connection and belonging. Discussion and implications The insights offered by EI professionals into how early supports can be adapted to better meet the needs of minority ethnic parents and autistic children can inform more equitable policy-level decision-making for service provision. En ligne : https://doi.org/10.1016/j.reia.2025.202655 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=565 [article] "Individualisation is key": Autism intervention professionals' experiences of working with minority ethnic families in Australia [Texte imprimé et/ou numérique] / Kristelle HUDRY, Auteur ; Alexandra AULICH, Auteur ; Catherine BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie GREEN, Auteur ; Rabia IJAZ, Auteur ; Emily MA, Auteur ; Kanisha PATEL, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Jodie SMITH, Auteur . - p.202655. Langues : Anglais (eng) in Research in Autism > 126 (August 2025) . - p.202655 Mots-clés : Autism  Early Intervention  Participatory Research  Cultural Diversity  Linguistic Diversity Index. décimale : PER Périodiques Résumé : Introduction Early intervention (EI) professionals play an important role in supporting autistic children and their families. When families come from minority ethnic communities, the early autism journey is often more complex than for native-born families for caregivers and professionals alike. Whilst there is growing awareness about parents' experiences, we have little data from EI professionals on what can be done to improve the experiences, engagement and outcomes for these families. Here, we sought professional insights on their efforts to provide early autism supports for minority ethnic families, namely those from Chinese and South Asian backgrounds. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with EI professionals who had experience working with autistic children and their families from Chinese and South Asian backgrounds in Australia (n = 18). Data were analysed using inductive reflexive thematic analysis. Results Participating EI professionals described the challenge of developing a common language to talk about autism and supports with families, and often had different intervention priorities when compared to parents. They described observing parents' own unmet mental health and wellbeing needs, which they felt were compounded by shame and stigma associated with autism within their specific communities. Moreover, professionals relayed their powerlessness in effectively supporting parents' wellbeing due to a funding model focused solely on child goals. Participating professionals felt that the best way to work with families was to start by truly understanding the child, the parent and the family dynamics in order to tailor supports, as well as to encourage community connection and belonging. Discussion and implications The insights offered by EI professionals into how early supports can be adapted to better meet the needs of minority ethnic parents and autistic children can inform more equitable policy-level decision-making for service provision. En ligne : https://doi.org/10.1016/j.reia.2025.202655 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=565

"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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