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

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

Public ISBD [article]  inAutism > 27-8 (November 2023) . - p.2256-2268 Titre : A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 Type de document : Texte imprimé et/ou numérique Auteurs : Lisa Marie EMERSON, Auteur ; Elizabeth PELLICANO, Auteur ; Ruth MONK, Auteur ; Melissa LIM, Auteur ; Jessica HEATON, Auteur ; Laurie MCLAY, Auteur Article en page(s) : p.2256-2268 Mots-clés : autism research  autistic community  funding  research priorities Index. décimale : PER Périodiques Résumé : Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions. En ligne : http://dx.doi.org/10.1177/13623613231155954 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 [article] A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 [Texte imprimé et/ou numérique] / Lisa Marie EMERSON, Auteur ; Elizabeth PELLICANO, Auteur ; Ruth MONK, Auteur ; Melissa LIM, Auteur ; Jessica HEATON, Auteur ; Laurie MCLAY, Auteur . - p.2256-2268. in Autism > 27-8 (November 2023) . - p.2256-2268 Mots-clés : autism research  autistic community  funding  research priorities Index. décimale : PER Périodiques Résumé : Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions. En ligne : http://dx.doi.org/10.1177/13623613231155954 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513

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