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Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students / Tomisin OREDIPE in Autism, 27-1 (January 2023)
[article]
Titre : Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students Type de document : Texte imprimé et/ou numérique Auteurs : Tomisin OREDIPE, Auteur ; Bella KOFNER, Auteur ; Ariana RICCIO, Auteur ; Eilidh CAGE, Auteur ; Jonathan VINCENT, Auteur ; Steven K. KAPP, Auteur ; Patrick DWYER, Auteur ; Kristen GILLESPIE-LYNCH, Auteur Article en page(s) : p.200-212 Langues : Anglais (eng) Mots-clés : autistic adults disclosure neurodiversity participatory quality of life university well-being Index. décimale : PER Périodiques Résumé : Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is œready. In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students (n=78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood. Lay abstract People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are. En ligne : http://dx.doi.org/10.1177/13623613221086700 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Autism > 27-1 (January 2023) . - p.200-212[article] Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students [Texte imprimé et/ou numérique] / Tomisin OREDIPE, Auteur ; Bella KOFNER, Auteur ; Ariana RICCIO, Auteur ; Eilidh CAGE, Auteur ; Jonathan VINCENT, Auteur ; Steven K. KAPP, Auteur ; Patrick DWYER, Auteur ; Kristen GILLESPIE-LYNCH, Auteur . - p.200-212.
Langues : Anglais (eng)
in Autism > 27-1 (January 2023) . - p.200-212
Mots-clés : autistic adults disclosure neurodiversity participatory quality of life university well-being Index. décimale : PER Périodiques Résumé : Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is œready. In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students (n=78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood. Lay abstract People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are. En ligne : http://dx.doi.org/10.1177/13623613221086700 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review / Andrea MACLEOD in Research in Autism Spectrum Disorders, 64 (August 2019)
[article]
Titre : Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review Type de document : Texte imprimé et/ou numérique Auteurs : Andrea MACLEOD, Auteur Article en page(s) : p.49-62 Langues : Anglais (eng) Mots-clés : Interpretative phenomenological analysis Participatory Critical autism studies Autism Index. décimale : PER Périodiques Résumé : Purpose Interpretative phenomenological analysis is distinctive in foregrounding participants’ interpretations. As such, it is potentially useful for gaining an insight into the lived experience of autistic individuals and aligns well with participatory approaches. This paper provides the first systematic review of IPA studies that have employed a participatory approach and considers their contribution to Critical Autism Studies. Method Four electronic databases were searched to identify peer-reviewed empirical research articles which employed a participatory IPA approach to consult with autistic individuals. Thirteen studies from four countries, published 2008–2018, met the inclusion criteria. These were examined to identify details of the methodology, findings and recommendations in order to consider each in relation to the underpinning philosophies of IPA and participatory research respectively, and their relationship to the stated aims of Critical Autism Studies. Results A range of participatory approaches were employed and their use extended the depth and validity of findings. There was evidence of disruption to power relations in process and outcomes. Making sense of the autism diagnosis was a frequent point of discussion, even when this was not the focus of the study, and across studies, strong commonalities emerged, capturing a multi-dimensionality of ‘autistic identities’. Conclusion This review provides evidence of the usefulness of IPA as a research approach to consult with autistic individuals. It lends itself to a range of participatory techniques and there is scope for these to be used with diverse autistic populations, in order to extend the opportunities for autistic individuals to be represented, and represent themselves, within autism research. En ligne : https://doi.org/10.1016/j.rasd.2019.04.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=399
in Research in Autism Spectrum Disorders > 64 (August 2019) . - p.49-62[article] Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review [Texte imprimé et/ou numérique] / Andrea MACLEOD, Auteur . - p.49-62.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 64 (August 2019) . - p.49-62
Mots-clés : Interpretative phenomenological analysis Participatory Critical autism studies Autism Index. décimale : PER Périodiques Résumé : Purpose Interpretative phenomenological analysis is distinctive in foregrounding participants’ interpretations. As such, it is potentially useful for gaining an insight into the lived experience of autistic individuals and aligns well with participatory approaches. This paper provides the first systematic review of IPA studies that have employed a participatory approach and considers their contribution to Critical Autism Studies. Method Four electronic databases were searched to identify peer-reviewed empirical research articles which employed a participatory IPA approach to consult with autistic individuals. Thirteen studies from four countries, published 2008–2018, met the inclusion criteria. These were examined to identify details of the methodology, findings and recommendations in order to consider each in relation to the underpinning philosophies of IPA and participatory research respectively, and their relationship to the stated aims of Critical Autism Studies. Results A range of participatory approaches were employed and their use extended the depth and validity of findings. There was evidence of disruption to power relations in process and outcomes. Making sense of the autism diagnosis was a frequent point of discussion, even when this was not the focus of the study, and across studies, strong commonalities emerged, capturing a multi-dimensionality of ‘autistic identities’. Conclusion This review provides evidence of the usefulness of IPA as a research approach to consult with autistic individuals. It lends itself to a range of participatory techniques and there is scope for these to be used with diverse autistic populations, in order to extend the opportunities for autistic individuals to be represented, and represent themselves, within autism research. En ligne : https://doi.org/10.1016/j.rasd.2019.04.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=399 Learning from the experts: Evaluating a participatory autism and universal design training for university educators / TC WAISMAN in Autism, 27-2 (February 2023)
[article]
Titre : Learning from the experts: Evaluating a participatory autism and universal design training for university educators Type de document : Texte imprimé et/ou numérique Auteurs : TC WAISMAN, Auteur ; Zachary J. WILLIAMS, Auteur ; Eilidh CAGE, Auteur ; Siva Priya SANTHANAM, Auteur ; Iliana MAGIATI, Auteur ; Patrick DWYER, Auteur ; Kayden M. STOCKWELL, Auteur ; Bella KOFNER, Auteur ; Heather BROWN, Auteur ; Denise DAVIDSON, Auteur ; Jessye HERRELL, Auteur ; Stephen M. SHORE, Auteur ; Dave CAUDEL, Auteur ; Emine GURBUZ, Auteur ; Kristen GILLESPIE-LYNCH, Auteur Article en page(s) : p.356-370 Langues : Anglais (eng) Mots-clés : autism training autistic university students higher education participatory stigma universal design Index. décimale : PER Périodiques Résumé : Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally. En ligne : http://dx.doi.org/10.1177/13623613221097207 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493
in Autism > 27-2 (February 2023) . - p.356-370[article] Learning from the experts: Evaluating a participatory autism and universal design training for university educators [Texte imprimé et/ou numérique] / TC WAISMAN, Auteur ; Zachary J. WILLIAMS, Auteur ; Eilidh CAGE, Auteur ; Siva Priya SANTHANAM, Auteur ; Iliana MAGIATI, Auteur ; Patrick DWYER, Auteur ; Kayden M. STOCKWELL, Auteur ; Bella KOFNER, Auteur ; Heather BROWN, Auteur ; Denise DAVIDSON, Auteur ; Jessye HERRELL, Auteur ; Stephen M. SHORE, Auteur ; Dave CAUDEL, Auteur ; Emine GURBUZ, Auteur ; Kristen GILLESPIE-LYNCH, Auteur . - p.356-370.
Langues : Anglais (eng)
in Autism > 27-2 (February 2023) . - p.356-370
Mots-clés : autism training autistic university students higher education participatory stigma universal design Index. décimale : PER Périodiques Résumé : Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally. En ligne : http://dx.doi.org/10.1177/13623613221097207 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493 In Our Own Words: The Complex Sensory Experiences of Autistic Adults / K. MACLENNAN in Journal of Autism and Developmental Disorders, 52-7 (July 2022)
[article]
Titre : In Our Own Words: The Complex Sensory Experiences of Autistic Adults Type de document : Texte imprimé et/ou numérique Auteurs : K. MACLENNAN, Auteur ; S. O'BRIEN, Auteur ; Teresa TAVASSOLI, Auteur Article en page(s) : p.3061-3075 Langues : Anglais (eng) Mots-clés : Adult Autism Spectrum Disorder/complications Autistic Disorder/complications Humans Quality of Life Surveys and Questionnaires Autism Autistic Participatory Qualitative Sensory content of this article. Index. décimale : PER Périodiques Résumé : Autistic adults commonly experience sensory reactivity differences. Sensory hyperreactivity is frequently researched, whilst hyporeactivity and seeking, and experiences across domains, e.g., vision, are often neglected. Therefore, we aimed to understand more about the sensory experiences of autistic adults. We conducted a mixed-methods study, co-produced with stakeholders; recruiting 49 autistic adults who completed an online survey. Firstly, quantitative results and content analysis enhanced our understanding of sensory input/contexts associated with sensory hyperreactivity, hyporeactivity, and seeking across modalities. Secondly, thematic analysis developed themes relating to 'Outcomes', 'Control', 'Tolerance and management', and 'The role of other people', informing a theoretical model of sensory reactivity differences in autistic adults. These findings have implications for support services and improving quality of life for autistic adults. En ligne : http://dx.doi.org/10.1007/s10803-021-05186-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477
in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3061-3075[article] In Our Own Words: The Complex Sensory Experiences of Autistic Adults [Texte imprimé et/ou numérique] / K. MACLENNAN, Auteur ; S. O'BRIEN, Auteur ; Teresa TAVASSOLI, Auteur . - p.3061-3075.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3061-3075
Mots-clés : Adult Autism Spectrum Disorder/complications Autistic Disorder/complications Humans Quality of Life Surveys and Questionnaires Autism Autistic Participatory Qualitative Sensory content of this article. Index. décimale : PER Périodiques Résumé : Autistic adults commonly experience sensory reactivity differences. Sensory hyperreactivity is frequently researched, whilst hyporeactivity and seeking, and experiences across domains, e.g., vision, are often neglected. Therefore, we aimed to understand more about the sensory experiences of autistic adults. We conducted a mixed-methods study, co-produced with stakeholders; recruiting 49 autistic adults who completed an online survey. Firstly, quantitative results and content analysis enhanced our understanding of sensory input/contexts associated with sensory hyperreactivity, hyporeactivity, and seeking across modalities. Secondly, thematic analysis developed themes relating to 'Outcomes', 'Control', 'Tolerance and management', and 'The role of other people', informing a theoretical model of sensory reactivity differences in autistic adults. These findings have implications for support services and improving quality of life for autistic adults. En ligne : http://dx.doi.org/10.1007/s10803-021-05186-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 A Portfolio Analysis of Autism Research Funding in Australia, 2008-2017 / Jacquiline DEN HOUTING in Journal of Autism and Developmental Disorders, 49-11 (November 2019)
[article]
Titre : A Portfolio Analysis of Autism Research Funding in Australia, 2008-2017 Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; E. PELLICANO, Auteur Article en page(s) : p.4400-4408 Langues : Anglais (eng) Mots-clés : Australia Autism Funding Participatory Portfolio analysis Research priorities Index. décimale : PER Périodiques Résumé : Autism research funding across the world has disproportionately been invested in biological and genetic research, despite evidence that these topics are not prioritized by community members. We sought to determine whether a similar pattern was evident in Australia's autism research funding landscape between 2008 and 2017, by analysing the nation's portfolio of autism research investments. We also examined whether there was any change in this pattern of funding since the establishment in 2013 of the Cooperative Research Centre for Living with Autism (Autism CRC). Overall, Australian autism research funding during 2008-2017 followed a similar pattern to other countries, but shifted in the past 5 years. Further progress is required to bring research funding into line with community priorities. En ligne : http://dx.doi.org/10.1007/s10803-019-04155-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=408
in Journal of Autism and Developmental Disorders > 49-11 (November 2019) . - p.4400-4408[article] A Portfolio Analysis of Autism Research Funding in Australia, 2008-2017 [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; E. PELLICANO, Auteur . - p.4400-4408.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 49-11 (November 2019) . - p.4400-4408
Mots-clés : Australia Autism Funding Participatory Portfolio analysis Research priorities Index. décimale : PER Périodiques Résumé : Autism research funding across the world has disproportionately been invested in biological and genetic research, despite evidence that these topics are not prioritized by community members. We sought to determine whether a similar pattern was evident in Australia's autism research funding landscape between 2008 and 2017, by analysing the nation's portfolio of autism research investments. We also examined whether there was any change in this pattern of funding since the establishment in 2013 of the Cooperative Research Centre for Living with Autism (Autism CRC). Overall, Australian autism research funding during 2008-2017 followed a similar pattern to other countries, but shifted in the past 5 years. Further progress is required to bring research funding into line with community priorities. En ligne : http://dx.doi.org/10.1007/s10803-019-04155-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=408