'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis / Chris EDWARDS in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1107-1119 Titre : 'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis Type de document : Texte imprimé et/ou numérique Auteurs : Chris EDWARDS, Auteur ; Abigail M.A. LOVE, Auteur ; Sandra C. JONES, Auteur ; Ru Ying CAI, Auteur ; Boyd Thai Hoang NGUYEN, Auteur ; Vicki GIBBS, Auteur Article en page(s) : p.1107-1119 Langues : Anglais (eng) Mots-clés : autistic adults  disclosure  discrimination  qualitative research  social media  stigma Index. décimale : PER Périodiques Résumé : Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020?2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society?s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody?s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure - that is sharing their autism diagnosis or identity with a person or people - is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to. En ligne : https://dx.doi.org/10.1177/13623613231192133 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis [Texte imprimé et/ou numérique] / Chris EDWARDS, Auteur ; Abigail M.A. LOVE, Auteur ; Sandra C. JONES, Auteur ; Ru Ying CAI, Auteur ; Boyd Thai Hoang NGUYEN, Auteur ; Vicki GIBBS, Auteur . - p.1107-1119. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1107-1119 Mots-clés : autistic adults  disclosure  discrimination  qualitative research  social media  stigma Index. décimale : PER Périodiques Résumé : Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020?2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society?s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody?s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure - that is sharing their autism diagnosis or identity with a person or people - is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to. En ligne : https://dx.doi.org/10.1177/13623613231192133 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

A qualitative exploration of an autism-specific self-compassion program: The ASPAA / Chris EDWARDS in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1419-1430 Titre : A qualitative exploration of an autism-specific self-compassion program: The ASPAA Type de document : Texte imprimé et/ou numérique Auteurs : Chris EDWARDS, Auteur ; Vicki GIBBS, Auteur ; Abigail M.A. LOVE, Auteur ; Lydia BROWN, Auteur ; Ru Ying CAI, Auteur Article en page(s) : p.1419-1430 Langues : Anglais (eng) Mots-clés : autistic adults  intervention  online  qualitative research  self-compassion Index. décimale : PER Périodiques Résumé : As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity. Lay abstract Autistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called "self-compassion," which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn?t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5?weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better. En ligne : https://dx.doi.org/10.1177/13623613241234097 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] A qualitative exploration of an autism-specific self-compassion program: The ASPAA [Texte imprimé et/ou numérique] / Chris EDWARDS, Auteur ; Vicki GIBBS, Auteur ; Abigail M.A. LOVE, Auteur ; Lydia BROWN, Auteur ; Ru Ying CAI, Auteur . - p.1419-1430. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1419-1430 Mots-clés : autistic adults  intervention  online  qualitative research  self-compassion Index. décimale : PER Périodiques Résumé : As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity. Lay abstract Autistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called "self-compassion," which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn?t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5?weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better. En ligne : https://dx.doi.org/10.1177/13623613241234097 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

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