Cutting our own keys: New possibilities of neurodivergent storying in research / Hanna BERTILSDOTTER ROSQVIST in Autism, 27-5 (July 2023)  

Public ISBD [article]  inAutism > 27-5 (July 2023) . - p.1235-1244 Titre : Cutting our own keys: New possibilities of neurodivergent storying in research Type de document : Texte imprimé et/ou numérique Auteurs : Hanna BERTILSDOTTER ROSQVIST, Auteur ; Monique BOTHA, Auteur ; Kristien HENS, Auteur ; Sarinah O?DONOGHUE, Auteur ; Amy PEARSON, Auteur ; Anna STENNING, Auteur Article en page(s) : p.1235-1244 Langues : Anglais (eng) Mots-clés : autoethnography;cross-neurotype communication;neurodivergent storying;neuromixed academia;non-autistic-storying Index. décimale : PER Périodiques Résumé : Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the "nothing about us without us" slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of "cutting our own keys", to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself. Lay abstract A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) - in truly "neurodiverse" teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways. En ligne : http://dx.doi.org/10.1177/13623613221132107 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507 [article] Cutting our own keys: New possibilities of neurodivergent storying in research [Texte imprimé et/ou numérique] / Hanna BERTILSDOTTER ROSQVIST, Auteur ; Monique BOTHA, Auteur ; Kristien HENS, Auteur ; Sarinah O?DONOGHUE, Auteur ; Amy PEARSON, Auteur ; Anna STENNING, Auteur . - p.1235-1244. Langues : Anglais (eng) in Autism > 27-5 (July 2023) . - p.1235-1244 Mots-clés : autoethnography;cross-neurotype communication;neurodivergent storying;neuromixed academia;non-autistic-storying Index. décimale : PER Périodiques Résumé : Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the "nothing about us without us" slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of "cutting our own keys", to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself. Lay abstract A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) - in truly "neurodiverse" teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways. En ligne : http://dx.doi.org/10.1177/13623613221132107 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507

Manuel de l’autiste / Martin DESSEILLES

Public ISBD Titre : Manuel de l’autiste Type de document : Texte imprimé et/ou numérique Auteurs : Martin DESSEILLES, Auteur ; Bernadette GROSJEAN, Auteur ; Markus KOSEL, Auteur ; Nader PERROUD, Auteur ; Sébastien WEIBEL, Auteur ; Luisa WEINER HUBER MENDES, Auteur ; Kristien HENS, Préfacier, etc. ; Stephan ELIEZ, Préfacier, etc. ; Josef SCHOVANEC, Préfacier, etc. ; Alexis BEAUCHAMP-CHÂTEL, Préfacier, etc. ; Eric WILLAYE, Préfacier, etc. Editeur : Paris [France] : Eyrolles Année de publication : 2022 Importance : 210 p. Présentation : ill Format : 19,0 cm × 24,0 cm × 1,6 cm ISBN/ISSN/EAN : 978-2-416-00396-7 Note générale : Bibliogr. Langues : Français (fre) Index. décimale : AUT-A AUT-A - L'Autisme - Pour Démarrer Résumé : L'autisme est un trouble mystérieux, qui fascine autant qu'il effraie, notamment parce que les personnes qui en souffrent semblent isolées dans un monde intérieur. La diversité de ses manifestations, la difficulté à établir son origine font de ce trouble mentale un trouble à part. On parle désormais de troubles du spectre de l'autisme (TSA) pour désigner ce qui apparaît aujourd'hui comme une anomalie du neurodéveloppement très précoce. Les TSA sont très divers. Il peut s'agir d'altérations des interactions sociales, de problèmes de communication (langage et communication non verbale), de troubles du comportement correspondant à un répertoire d'intérêts et d'activités restreint, stéréotypé et répétitif, de réactions sensorielles inhabituelles... qui sont souvent à l'origine de difficultés d'apprentissage et d'insertion sociale. Et pour compliquer le tout, l'autisme ne correspond pas forcément à une déficience intellectuelle (qui ne concerne qu'un tiers des personnes diagnostiquées) : le syndrome Asperger est un TSA associé à un très bon développement intellectuel. [Résumé d'Auteur/Editeur] Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=494 Manuel de l’autiste [Texte imprimé et/ou numérique] / Martin DESSEILLES, Auteur ; Bernadette GROSJEAN, Auteur ; Markus KOSEL, Auteur ; Nader PERROUD, Auteur ; Sébastien WEIBEL, Auteur ; Luisa WEINER HUBER MENDES, Auteur ; Kristien HENS, Préfacier, etc. ; Stephan ELIEZ, Préfacier, etc. ; Josef SCHOVANEC, Préfacier, etc. ; Alexis BEAUCHAMP-CHÂTEL, Préfacier, etc. ; Eric WILLAYE, Préfacier, etc. . - Paris [France] : Eyrolles, 2022 . - 210 p. : ill ; 19,0 cm × 24,0 cm × 1,6 cm. ISBN : 978-2-416-00396-7 Bibliogr. Langues : Français (fre) Index. décimale : AUT-A AUT-A - L'Autisme - Pour Démarrer Résumé : L'autisme est un trouble mystérieux, qui fascine autant qu'il effraie, notamment parce que les personnes qui en souffrent semblent isolées dans un monde intérieur. La diversité de ses manifestations, la difficulté à établir son origine font de ce trouble mentale un trouble à part. On parle désormais de troubles du spectre de l'autisme (TSA) pour désigner ce qui apparaît aujourd'hui comme une anomalie du neurodéveloppement très précoce. Les TSA sont très divers. Il peut s'agir d'altérations des interactions sociales, de problèmes de communication (langage et communication non verbale), de troubles du comportement correspondant à un répertoire d'intérêts et d'activités restreint, stéréotypé et répétitif, de réactions sensorielles inhabituelles... qui sont souvent à l'origine de difficultés d'apprentissage et d'insertion sociale. Et pour compliquer le tout, l'autisme ne correspond pas forcément à une déficience intellectuelle (qui ne concerne qu'un tiers des personnes diagnostiquées) : le syndrome Asperger est un TSA associé à un très bon développement intellectuel. [Résumé d'Auteur/Editeur] Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=494

Exemplaires (1)

Code-barres	Cote	Support	Localisation	Section	Disponibilité
DOC0006583	AUT-A DES	Livre	Centre d'Information et de Documentation du CRA Rhône-Alpes	AUT - L'Autisme	Disponible

Les abonnés qui ont emprunté ce document ont également emprunté :

Devenir détective de l’autisme	PIAT, Jean-Philippe
L'autisme, une autre intelligence	MOTTRON, Laurent
Asperguide - Guide du syndrome d'Asperger	IZQUIERDO PRINDLE, Tanya
Et si vous étiez autiste ?	COSSE, Anne
Je réinvente ma vie	YOUNG, Jeffrey E.
Le guide de l'orientation professionnelle, du bilan de compétences des personnes atteintes de TSA	VERZAT, Christine

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism / Gert-Jan VANAKEN in Journal of Autism and Developmental Disorders, 54-11 (November)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-11 (November) . - p.4130-4144 Titre : The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism Type de document : Texte imprimé et/ou numérique Auteurs : Gert-Jan VANAKEN, Auteur ; Ilse NOENS, Auteur ; Jean STEYAERT, Auteur ; Lotte VAN ESCH, Auteur ; Petra WARREYN, Auteur ; Kristien HENS, Auteur Article en page(s) : p.4130-4144 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from "normal" parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection. En ligne : https://doi.org/10.1007/s10803-023-06139-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537 [article] The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism [Texte imprimé et/ou numérique] / Gert-Jan VANAKEN, Auteur ; Ilse NOENS, Auteur ; Jean STEYAERT, Auteur ; Lotte VAN ESCH, Auteur ; Petra WARREYN, Auteur ; Kristien HENS, Auteur . - p.4130-4144. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-11 (November) . - p.4130-4144 Index. décimale : PER Périodiques Résumé : Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from "normal" parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection. En ligne : https://doi.org/10.1007/s10803-023-06139-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537

Towards a neurodiversity-affirmative conceptualisation of psycho-education in the context of autism / Gert-Jan VANAKEN ; Jean STEYAERT ; Kristien HENS ; Ilse NOENS in Research in Autism Spectrum Disorders, 114 (June 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 114 (June 2024) . - p.102391 Titre : Towards a neurodiversity-affirmative conceptualisation of psycho-education in the context of autism Type de document : Texte imprimé et/ou numérique Auteurs : Gert-Jan VANAKEN, Auteur ; Jean STEYAERT, Auteur ; Kristien HENS, Auteur ; Ilse NOENS, Auteur Année de publication : 2024 Article en page(s) : p.102391 Langues : Anglais (eng) Mots-clés : Autism  Psycho-education  Neurodiversity Index. décimale : PER Périodiques Résumé : Introduction Psycho-education is a practice often used in autism care, bridging between diagnosis and clinical counselling. In the autism literature, there is a shift towards defining autism in terms of deficit to defining autism in terms of neurodiversity. Literature increasingly indicates that this neurodiversity conceptualisation may lead to a more positive identity and less internalised stigma. Therefore we investigated to what extent this shift to neurodiversity-affirmative psycho-education has already occurred in the context of clinical care in Flanders, Belgium. Methods We reviewed the three psycho-educational tools that are most recommended and practically used in our region (I am special 2, Brain Blocks, Give me 5), deploying a reflexive thematic analysis. Results Three overarching themes emerged from the analysis: (1) differing but mainly deficit-based autism conceptualisations (2) needs are important but little specified; (3) knowledge transfer as the main goal. Discussion The shift to neurodiversity-affirmative psycho-education has not yet occurred in clinical care in Flanders. We recommend centring lived experiences in psycho-educational tools, including more recent theories such as monotropism and the double empathy problem, and conducting more participatory research concerning different stakeholders' needs. Lay abstract Psycho-education is a practice that is often used in clinical care in the context of autism to bridge diagnostics and clinical counselling. There are different definitions of what psycho-education should entail, but possible themes can be 'what autism is' and how the current needs of the individual and the environment can be addressed. At the same time, there is a shift in literature from defining autism in terms of deficits to defining autism in terms of difference (neurodiversity), where difficulties arise from a mismatch between the individual and their context. In this paper, we investigated three psycho-educational tools (I am special 2, Brain Blocks, Give me 5). More specifically, we investigated to what extent these psycho-educational tools are in line with neurodiversity-affirmative views. We found that the psycho-educational tools did not always specify how they understood autism. Autism was frequently described in terms of deficits. Also, the tools did not always mention which and whose needs they wanted to cater for (an autistic person, relatives,?). Lastly, the tools had a strong focus on addressing 'what autism is' - thereby mainly focussing on knowledge, and less on needs or emotional support. This differs from the approach recommended by recent literature in relevant fields. This paper gives a starting point to evaluate current psycho-education practices and recommends developing new psycho-educational tools that place first-hand autistic needs and experiences at the centre and push back against harmful stereotypes about autism. En ligne : https://doi.org/10.1016/j.rasd.2024.102391 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Towards a neurodiversity-affirmative conceptualisation of psycho-education in the context of autism [Texte imprimé et/ou numérique] / Gert-Jan VANAKEN, Auteur ; Jean STEYAERT, Auteur ; Kristien HENS, Auteur ; Ilse NOENS, Auteur . - 2024 . - p.102391. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 114 (June 2024) . - p.102391 Mots-clés : Autism  Psycho-education  Neurodiversity Index. décimale : PER Périodiques Résumé : Introduction Psycho-education is a practice often used in autism care, bridging between diagnosis and clinical counselling. In the autism literature, there is a shift towards defining autism in terms of deficit to defining autism in terms of neurodiversity. Literature increasingly indicates that this neurodiversity conceptualisation may lead to a more positive identity and less internalised stigma. Therefore we investigated to what extent this shift to neurodiversity-affirmative psycho-education has already occurred in the context of clinical care in Flanders, Belgium. Methods We reviewed the three psycho-educational tools that are most recommended and practically used in our region (I am special 2, Brain Blocks, Give me 5), deploying a reflexive thematic analysis. Results Three overarching themes emerged from the analysis: (1) differing but mainly deficit-based autism conceptualisations (2) needs are important but little specified; (3) knowledge transfer as the main goal. Discussion The shift to neurodiversity-affirmative psycho-education has not yet occurred in clinical care in Flanders. We recommend centring lived experiences in psycho-educational tools, including more recent theories such as monotropism and the double empathy problem, and conducting more participatory research concerning different stakeholders' needs. Lay abstract Psycho-education is a practice that is often used in clinical care in the context of autism to bridge diagnostics and clinical counselling. There are different definitions of what psycho-education should entail, but possible themes can be 'what autism is' and how the current needs of the individual and the environment can be addressed. At the same time, there is a shift in literature from defining autism in terms of deficits to defining autism in terms of difference (neurodiversity), where difficulties arise from a mismatch between the individual and their context. In this paper, we investigated three psycho-educational tools (I am special 2, Brain Blocks, Give me 5). More specifically, we investigated to what extent these psycho-educational tools are in line with neurodiversity-affirmative views. We found that the psycho-educational tools did not always specify how they understood autism. Autism was frequently described in terms of deficits. Also, the tools did not always mention which and whose needs they wanted to cater for (an autistic person, relatives,?). Lastly, the tools had a strong focus on addressing 'what autism is' - thereby mainly focussing on knowledge, and less on needs or emotional support. This differs from the approach recommended by recent literature in relevant fields. This paper gives a starting point to evaluate current psycho-education practices and recommends developing new psycho-educational tools that place first-hand autistic needs and experiences at the centre and push back against harmful stereotypes about autism. En ligne : https://doi.org/10.1016/j.rasd.2024.102391 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

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