Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation / Lydia HICKMAN ; Joan LEUNG ; Ruth MONK ; Alicia MONTGOMERY ; Hannah HEATH ; Sophie SOWDEN in Autism Research, 16-2 (February 2023)  

Public ISBD [article]  inAutism Research > 16-2 (February 2023) . - p.406-428 Titre : Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation Type de document : Texte imprimé et/ou numérique Auteurs : Lydia HICKMAN, Auteur ; Joan LEUNG, Auteur ; Ruth MONK, Auteur ; Alicia MONTGOMERY, Auteur ; Hannah HEATH, Auteur ; Sophie SOWDEN, Auteur Article en page(s) : p.406-428 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., 'high-functioning'). To date, academic studies have not investigated the language preferences of autistic individuals outside of the United Kingdom or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar-the terms 'Autism', 'Autistic person', 'Is autistic', 'Neurological/Brain Difference', 'Differences', 'Challenges', 'Difficulties', 'Neurotypical people', and 'Neurotypicals' were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants' preferences, generating six core themes, and illuminated an important guiding principle-to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide. En ligne : https://doi.org/10.1002/aur.2864 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=496 [article] Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation [Texte imprimé et/ou numérique] / Lydia HICKMAN, Auteur ; Joan LEUNG, Auteur ; Ruth MONK, Auteur ; Alicia MONTGOMERY, Auteur ; Hannah HEATH, Auteur ; Sophie SOWDEN, Auteur . - p.406-428. Langues : Anglais (eng) in Autism Research > 16-2 (February 2023) . - p.406-428 Index. décimale : PER Périodiques Résumé : Abstract Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., 'high-functioning'). To date, academic studies have not investigated the language preferences of autistic individuals outside of the United Kingdom or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar-the terms 'Autism', 'Autistic person', 'Is autistic', 'Neurological/Brain Difference', 'Differences', 'Challenges', 'Difficulties', 'Neurotypical people', and 'Neurotypicals' were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants' preferences, generating six core themes, and illuminated an important guiding principle-to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide. En ligne : https://doi.org/10.1002/aur.2864 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=496

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

Community Priorities for Outcomes Targeted During Professional Supports for Autistic Children and their Families / Chris EDWARDS ; Ruth MONK ; Lee PATRICK ; Sarah PILLAR ; Hannah WADDINGTON in Journal of Autism and Developmental Disorders, 55-5 (May 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1890-1901 Titre : Community Priorities for Outcomes Targeted During Professional Supports for Autistic Children and their Families Type de document : Texte imprimé et/ou numérique Auteurs : Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Hannah WADDINGTON, Auteur Article en page(s) : p.1890-1901 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Professional supports play an important role in aiding autistic children?s learning, participation, and overall wellbeing. Yet, limited research exists on stakeholders' perspectives and preferences regarding targeted outcomes for children undergoing support facilitated by professionals. This study investigated stakeholder views on the priority and appropriateness of outcomes intentionally targeted during the provision of supports to autistic children. En ligne : https://doi.org/10.1007/s10803-024-06333-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Community Priorities for Outcomes Targeted During Professional Supports for Autistic Children and their Families [Texte imprimé et/ou numérique] / Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Hannah WADDINGTON, Auteur . - p.1890-1901. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1890-1901 Index. décimale : PER Périodiques Résumé : Professional supports play an important role in aiding autistic children?s learning, participation, and overall wellbeing. Yet, limited research exists on stakeholders' perspectives and preferences regarding targeted outcomes for children undergoing support facilitated by professionals. This study investigated stakeholder views on the priority and appropriateness of outcomes intentionally targeted during the provision of supports to autistic children. En ligne : https://doi.org/10.1007/s10803-024-06333-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Health service utilization among autistic youth in Aotearoa New Zealand: A nationwide cross-sectional study / Laurie K MCLAY in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1143-1156 Titre : Health service utilization among autistic youth in Aotearoa New Zealand: A nationwide cross-sectional study Type de document : Texte imprimé et/ou numérique Auteurs : Laurie K MCLAY, Auteur ; Philip J SCHLUTER, Auteur ; John WILLIAMS, Auteur ; Francesca ANNS, Auteur ; Ruth MONK, Auteur ; Joanne DACOMBE, Auteur ; Gabrielle HOGG, Auteur ; Jessica TUPOU, Auteur ; Troy RUHE, Auteur ; Taylor Scott, Auteur ; Emma WOODFORD, Auteur ; Hiran THABREW, Auteur ; Nicholas BOWDEN, Auteur Article en page(s) : p.1143-1156 Langues : Anglais (eng) Mots-clés : autism  co-occurring conditions  health  health service use  mental health  pharmaceutical dispensing  youth Index. décimale : PER Périodiques Résumé : Many autistic youth have complex healthcare needs, resulting in high rates of health service utilization. However, many characteristics of this health service utilization remain unknown. Using whole-of-population data, this study aimed to quantify and compare rates of psychiatric and non-psychiatric health service utilization among autistic and non-autistic youth, with and without co-occurring intellectual disability. A national retrospective cohort study was employed using linked individual-level administrative data for Aotearoa New Zealand youth (aged 0-24?years). Health service utilization outcomes included 11 psychiatric and non-psychiatric domains. Propensity score matching on a range of sociodemographic measures compared groups across health service utilization outcomes. Data were obtained for 19,479 autistic youth, 29% of whom had a co-occurring intellectual disability and 1,561,278 non-autistic youth. Results demonstrated higher rates of mental health service utilization among autistic compared with non-autistic youth, including inpatient (prevalence ratio 5.85; 95% confidence interval 4.93-6.94) and outpatient (prevalence ratio 4.96; 95% confidence interval 4.75-5.18) service use and psychotropic medication dispensing (prevalence ratio 6.83; 95% confidence interval 6.65-7.02), particularly among autistic youth without intellectual disability. Rates of non-psychiatric hospital admissions (prevalence ratio 1.93; 95% confidence interval 1.85-2.01), potentially avoidable hospitalizations (prevalence ratio 1.91; 95% confidence interval 1.82-2.00) and outpatient visits (prevalence ratio 1.99; 95% confidence interval 1.95-2.01) were also higher among autistic youth. Research implications for delivery of healthcare services are discussed.Lay abstract Autistic youth generally use healthcare services more often than non-autistic youth. However, we know very little about the factors that can affect health service use and the types of services that are used, and this has not been explored in Aotearoa New Zealand. We analysed data from New Zealand to compare health service use among autistic and non-autistic youth (0 to 24-year-olds). Data were available for 19,479 autistic youth and 1,561,278 non-autistic youth. We compared hospitalizations, specialist visits, emergency department visits and use of different types of medications. In this study, autistic youth were found to have been hospitalized for medical and mental health reasons, more often than non-autistic youth. Autistic youth were also more likely to have attended specialist appointments and to have been given medication. These differences were particularly large for medications commonly used for mental health conditions (e.g. anxiety, depression, attention deficit hyperactivity disorder) or associated symptoms. Autistic youth who also had an intellectual disability were more likely to use healthcare services for physical health conditions, but were less likely to use mental health services, when compared with autistic youth who did not have an intellectual disability. These findings, along with other research, suggest that the healthcare needs of autistic youth are not always being met. Further work is needed to enhance our understanding of co-occurring conditions among autistic youth, including those that result in high rates of health service use, in order to inform the development of healthcare services and training for healthcare professionals to better cater to the needs of autistic youth. En ligne : https://dx.doi.org/10.1177/13623613241298352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] Health service utilization among autistic youth in Aotearoa New Zealand: A nationwide cross-sectional study [Texte imprimé et/ou numérique] / Laurie K MCLAY, Auteur ; Philip J SCHLUTER, Auteur ; John WILLIAMS, Auteur ; Francesca ANNS, Auteur ; Ruth MONK, Auteur ; Joanne DACOMBE, Auteur ; Gabrielle HOGG, Auteur ; Jessica TUPOU, Auteur ; Troy RUHE, Auteur ; Taylor Scott, Auteur ; Emma WOODFORD, Auteur ; Hiran THABREW, Auteur ; Nicholas BOWDEN, Auteur . - p.1143-1156. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1143-1156 Mots-clés : autism  co-occurring conditions  health  health service use  mental health  pharmaceutical dispensing  youth Index. décimale : PER Périodiques Résumé : Many autistic youth have complex healthcare needs, resulting in high rates of health service utilization. However, many characteristics of this health service utilization remain unknown. Using whole-of-population data, this study aimed to quantify and compare rates of psychiatric and non-psychiatric health service utilization among autistic and non-autistic youth, with and without co-occurring intellectual disability. A national retrospective cohort study was employed using linked individual-level administrative data for Aotearoa New Zealand youth (aged 0-24?years). Health service utilization outcomes included 11 psychiatric and non-psychiatric domains. Propensity score matching on a range of sociodemographic measures compared groups across health service utilization outcomes. Data were obtained for 19,479 autistic youth, 29% of whom had a co-occurring intellectual disability and 1,561,278 non-autistic youth. Results demonstrated higher rates of mental health service utilization among autistic compared with non-autistic youth, including inpatient (prevalence ratio 5.85; 95% confidence interval 4.93-6.94) and outpatient (prevalence ratio 4.96; 95% confidence interval 4.75-5.18) service use and psychotropic medication dispensing (prevalence ratio 6.83; 95% confidence interval 6.65-7.02), particularly among autistic youth without intellectual disability. Rates of non-psychiatric hospital admissions (prevalence ratio 1.93; 95% confidence interval 1.85-2.01), potentially avoidable hospitalizations (prevalence ratio 1.91; 95% confidence interval 1.82-2.00) and outpatient visits (prevalence ratio 1.99; 95% confidence interval 1.95-2.01) were also higher among autistic youth. Research implications for delivery of healthcare services are discussed.Lay abstract Autistic youth generally use healthcare services more often than non-autistic youth. However, we know very little about the factors that can affect health service use and the types of services that are used, and this has not been explored in Aotearoa New Zealand. We analysed data from New Zealand to compare health service use among autistic and non-autistic youth (0 to 24-year-olds). Data were available for 19,479 autistic youth and 1,561,278 non-autistic youth. We compared hospitalizations, specialist visits, emergency department visits and use of different types of medications. In this study, autistic youth were found to have been hospitalized for medical and mental health reasons, more often than non-autistic youth. Autistic youth were also more likely to have attended specialist appointments and to have been given medication. These differences were particularly large for medications commonly used for mental health conditions (e.g. anxiety, depression, attention deficit hyperactivity disorder) or associated symptoms. Autistic youth who also had an intellectual disability were more likely to use healthcare services for physical health conditions, but were less likely to use mental health services, when compared with autistic youth who did not have an intellectual disability. These findings, along with other research, suggest that the healthcare needs of autistic youth are not always being met. Further work is needed to enhance our understanding of co-occurring conditions among autistic youth, including those that result in high rates of health service use, in order to inform the development of healthcare services and training for healthcare professionals to better cater to the needs of autistic youth. En ligne : https://dx.doi.org/10.1177/13623613241298352 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

'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

A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 / Lisa Marie EMERSON in Autism, 27-8 (November 2023)  

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