'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion / Hannah RAPAPORT in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1305-1315 Titre : 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion Type de document : texte imprimé Auteurs : Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; KaÅ›ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1305-1315 Langues : Anglais (eng) Mots-clés : attention  flow  monotropism  quality of life  wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion [texte imprimé] / Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; KaÅ›ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur . - p.1305-1315. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1305-1315 Mots-clés : attention  flow  monotropism  quality of life  wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Making the future together: Shaping autism research through meaningful participation / Sue FLETCHER-WATSON in Autism, 23-4 (May 2019)  

Public ISBD [article]  inAutism > 23-4 (May 2019) . - p.943-953 Titre : Making the future together: Shaping autism research through meaningful participation Type de document : texte imprimé Auteurs : Sue FLETCHER-WATSON, Auteur ; Jon ADAMS, Auteur ; Kabie BROOK, Auteur ; Tony CHARMAN, Auteur ; Laura CRANE, Auteur ; James CUSACK, Auteur ; Susan R. LEEKAM, Auteur ; Damian MILTON, Auteur ; Jeremy R. PARR, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.943-953 Langues : Anglais (eng) Mots-clés : autism  community  disability rights  involvement  methods  participatory research Index. décimale : PER Périodiques Résumé : Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them. En ligne : http://dx.doi.org/10.1177/1362361318786721 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397 [article] Making the future together: Shaping autism research through meaningful participation [texte imprimé] / Sue FLETCHER-WATSON, Auteur ; Jon ADAMS, Auteur ; Kabie BROOK, Auteur ; Tony CHARMAN, Auteur ; Laura CRANE, Auteur ; James CUSACK, Auteur ; Susan R. LEEKAM, Auteur ; Damian MILTON, Auteur ; Jeremy R. PARR, Auteur ; Elizabeth PELLICANO, Auteur . - p.943-953. Langues : Anglais (eng) in Autism > 23-4 (May 2019) . - p.943-953 Mots-clés : autism  community  disability rights  involvement  methods  participatory research Index. décimale : PER Périodiques Résumé : Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them. En ligne : http://dx.doi.org/10.1177/1362361318786721 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397

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