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

Community perspectives on the appropriateness and importance of support goals for young autistic children / Hannah MINNELL ; Lee PATRICK ; Larah VAN DER MEER ; Ruth MONK ; Lisa WOODS ; Andrew JO WHITEHOUSE in Autism, 28-2 (February 2024)  

Public ISBD [article]  inAutism > 28-2 (February 2024) . - p.316?326 Titre : Community perspectives on the appropriateness and importance of support goals for young autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Hannah MINNELL, Auteur ; Lee PATRICK, Auteur ; Larah VAN DER MEER, Auteur ; Ruth MONK, Auteur ; Lisa WOODS, Auteur ; Andrew JO WHITEHOUSE, Auteur Article en page(s) : p.316?326 Mots-clés : autism  early support  goals  neurodiversity Index. décimale : PER Périodiques Résumé : There is little research regarding autistic adult, parent and professional perspectives on support goals for young autistic children. A total of 87 autistic adults, 159 parents of autistic children, and 80 clinical professionals living in New Zealand and Australia completed a survey about the appropriateness and importance of common support goals for young autistic children. Goals related to the adult supporting the child, the reduction and replacement of harmful behaviours, and improving child quality of life were the highest priority across participant groups, while goals related to child autism characteristics, play and academic skills were the lowest priority. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals and were more likely to rate these goal domains as inappropriate. More research is needed to understand the underlying reasons for these similarities and differences. Lay abstract Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People?s views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child?s quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals. En ligne : https://dx.doi.org/10.1177/13623613231168920 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Community perspectives on the appropriateness and importance of support goals for young autistic children [Texte imprimé et/ou numérique] / Hannah MINNELL, Auteur ; Lee PATRICK, Auteur ; Larah VAN DER MEER, Auteur ; Ruth MONK, Auteur ; Lisa WOODS, Auteur ; Andrew JO WHITEHOUSE, Auteur . - p.316?326. in Autism > 28-2 (February 2024) . - p.316?326 Mots-clés : autism  early support  goals  neurodiversity Index. décimale : PER Périodiques Résumé : There is little research regarding autistic adult, parent and professional perspectives on support goals for young autistic children. A total of 87 autistic adults, 159 parents of autistic children, and 80 clinical professionals living in New Zealand and Australia completed a survey about the appropriateness and importance of common support goals for young autistic children. Goals related to the adult supporting the child, the reduction and replacement of harmful behaviours, and improving child quality of life were the highest priority across participant groups, while goals related to child autism characteristics, play and academic skills were the lowest priority. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals and were more likely to rate these goal domains as inappropriate. More research is needed to understand the underlying reasons for these similarities and differences. Lay abstract Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People?s views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child?s quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals. En ligne : https://dx.doi.org/10.1177/13623613231168920 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children / Rhylee SULEK in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1275-1284 Titre : 'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Rhylee SULEK, Auteur ; Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Hannah WADDINGTON, Auteur Article en page(s) : p.1275-1284 Langues : Anglais (eng) Mots-clés : autism  co-production  early support services  neurodiversity  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Autistic advocates emphasise the need for neurodiversity-affirming and strengths-based approaches to support services; however, little is known about broader community perspectives regarding the appropriateness of offering early support services to autistic children. This co-designed mixed-methods study employed surveys to gather insights from 253 participants in Australia and New Zealand, including autistic adults, parents, and professionals. Participants shared views on the appropriateness of early support services for autistic children. About half of participants indicated that it was appropriate to provide early support services, while the other half indicated that it depended on the nature of those support services. Reflexive thematic analysis resulted in three overarching themes which explain these views. 'They are children first, after all' emphasises the importance of preserving childhood experiences and involving children in decision-making. 'We shouldn?t be aiming to fix the child' underscores the need for support services to align with neurodiversity-affirming approaches. Finally, 'Supports are beneficial' highlights the perceived positive impact that early, individualised support services can provide for autistic children. These findings predominantly signal a shift away from medicalised models towards a neurodiversity-affirming approach across participant groups.Lay abstract We do not know much about what support services people think are okay for young autistic children. This study was a survey of 253 people. We asked autistic adults, parents, and professionals from Australia and New Zealand whether they thought it was okay to provide support services to autistic children. About half the people who shared their thoughts said it was okay to provide support services to autistic children and the other half said it depended on what the support service was like. They had three main ideas about whether support services were okay or not. The first one is that we should remember that these autistic children are children first, so we need to keep their childhood experiences in mind and let them have a say in decisions. The second is that we should not try to 'fix' the child, but instead, use supports that respect and understand the unique ways the child thinks. The final idea is that early, personalised help is good for autistic children and can make a positive difference in their lives. This study suggests that we should focus on what each child needs, think about how children can join in, and provide help in ways that respect autistic children. En ligne : https://dx.doi.org/10.1177/13623613241302372 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] 'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children [Texte imprimé et/ou numérique] / Rhylee SULEK, Auteur ; Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Hannah WADDINGTON, Auteur . - p.1275-1284. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1275-1284 Mots-clés : autism  co-production  early support services  neurodiversity  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Autistic advocates emphasise the need for neurodiversity-affirming and strengths-based approaches to support services; however, little is known about broader community perspectives regarding the appropriateness of offering early support services to autistic children. This co-designed mixed-methods study employed surveys to gather insights from 253 participants in Australia and New Zealand, including autistic adults, parents, and professionals. Participants shared views on the appropriateness of early support services for autistic children. About half of participants indicated that it was appropriate to provide early support services, while the other half indicated that it depended on the nature of those support services. Reflexive thematic analysis resulted in three overarching themes which explain these views. 'They are children first, after all' emphasises the importance of preserving childhood experiences and involving children in decision-making. 'We shouldn?t be aiming to fix the child' underscores the need for support services to align with neurodiversity-affirming approaches. Finally, 'Supports are beneficial' highlights the perceived positive impact that early, individualised support services can provide for autistic children. These findings predominantly signal a shift away from medicalised models towards a neurodiversity-affirming approach across participant groups.Lay abstract We do not know much about what support services people think are okay for young autistic children. This study was a survey of 253 people. We asked autistic adults, parents, and professionals from Australia and New Zealand whether they thought it was okay to provide support services to autistic children. About half the people who shared their thoughts said it was okay to provide support services to autistic children and the other half said it depended on what the support service was like. They had three main ideas about whether support services were okay or not. The first one is that we should remember that these autistic children are children first, so we need to keep their childhood experiences in mind and let them have a say in decisions. The second is that we should not try to 'fix' the child, but instead, use supports that respect and understand the unique ways the child thinks. The final idea is that early, personalised help is good for autistic children and can make a positive difference in their lives. This study suggests that we should focus on what each child needs, think about how children can join in, and provide help in ways that respect autistic children. En ligne : https://dx.doi.org/10.1177/13623613241302372 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

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