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Auteur Monique BOTHA |
Documents disponibles écrits par cet auteur (8)
Faire une suggestion Affiner la rechercheAnti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2023) / Heini M. NATRI in Autism Research, 16-4 (April 2023)
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
in Autism > 27-5 (July 2023) . - p.1235-1244[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
Titre : Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood Type de document : Texte imprimé et/ou numérique Auteurs : Monique BOTHA, Auteur ; Lynsey MCDEVITT, Auteur ; Karis N. KING, Auteur ; Liz BISCOE, Auteur ; Kirsty TUCKER, Auteur ; Amy PEARSON, Auteur Article en page(s) : p.2014-2027 Langues : Anglais (eng) Mots-clés : adults diagnosis qualitative research Index. décimale : PER Périodiques Résumé : Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21-46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please'and (4) 'here?s a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality. Lay abstract Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone?s identity and neurodivergence. En ligne : https://dx.doi.org/10.1177/13623613231220418 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533
in Autism > 28-8 (August 2024) . - p.2014-2027[article] Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood [Texte imprimé et/ou numérique] / Monique BOTHA, Auteur ; Lynsey MCDEVITT, Auteur ; Karis N. KING, Auteur ; Liz BISCOE, Auteur ; Kirsty TUCKER, Auteur ; Amy PEARSON, Auteur . - p.2014-2027.
Langues : Anglais (eng)
in Autism > 28-8 (August 2024) . - p.2014-2027
Mots-clés : adults diagnosis qualitative research Index. décimale : PER Périodiques Résumé : Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21-46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please'and (4) 'here?s a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality. Lay abstract Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone?s identity and neurodivergence. En ligne : https://dx.doi.org/10.1177/13623613231220418 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533
Titre : 'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness Type de document : Texte imprimé et/ou numérique Auteurs : Monique BOTHA, Auteur ; Bridget DIBB, Auteur ; David M. FROST, Auteur Article en page(s) : p.2151-2164 Langues : Anglais (eng) Mots-clés : Humans Autistic Disorder/psychology Autism Spectrum Disorder Friends Mental Health Interpersonal Relations autistic community belongingness community identity political connectedness qualitative research social connectedness stigma wellbeing research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : A sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society. En ligne : http://dx.doi.org/10.1177/13623613221080248 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism > 26-8 (November 2022) . - p.2151-2164[article] 'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness [Texte imprimé et/ou numérique] / Monique BOTHA, Auteur ; Bridget DIBB, Auteur ; David M. FROST, Auteur . - p.2151-2164.
Langues : Anglais (eng)
in Autism > 26-8 (November 2022) . - p.2151-2164
Mots-clés : Humans Autistic Disorder/psychology Autism Spectrum Disorder Friends Mental Health Interpersonal Relations autistic community belongingness community identity political connectedness qualitative research social connectedness stigma wellbeing research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : A sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society. En ligne : http://dx.doi.org/10.1177/13623613221080248 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
Titre : Letter to the Editor: A possible threat to data integrity for online qualitative autism research Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Dawn ADAMS, Auteur ; Laura CRANE, Auteur ; Calliope HOLLINGUE, Auteur ; Connie ALLEN, Auteur ; Katherine ALMENDINGER, Auteur ; Monique BOTHA, Auteur ; Tori HAAR, Auteur ; Steven K. KAPP, Auteur ; Elizabeth WHEELEY, Auteur Article en page(s) : p.786-792 Langues : Anglais (eng) Mots-clés : fraud imposter research participation Index. décimale : PER Périodiques Résumé : Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay abstract Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. En ligne : https://dx.doi.org/10.1177/13623613231174543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523
in Autism > 28-3 (March 2024) . - p.786-792[article] Letter to the Editor: A possible threat to data integrity for online qualitative autism research [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Dawn ADAMS, Auteur ; Laura CRANE, Auteur ; Calliope HOLLINGUE, Auteur ; Connie ALLEN, Auteur ; Katherine ALMENDINGER, Auteur ; Monique BOTHA, Auteur ; Tori HAAR, Auteur ; Steven K. KAPP, Auteur ; Elizabeth WHEELEY, Auteur . - p.786-792.
Langues : Anglais (eng)
in Autism > 28-3 (March 2024) . - p.786-792
Mots-clés : fraud imposter research participation Index. décimale : PER Périodiques Résumé : Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay abstract Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. En ligne : https://dx.doi.org/10.1177/13623613231174543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523
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