Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence / Elizabeth K. CRIDLAND in Journal of Autism and Developmental Disorders, 44-6 (June 2014)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 44-6 (June 2014) . - p.1261-1274 Titre : Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Peter CAPUTI, Auteur ; Christopher A. MAGEE, Auteur Article en page(s) : p.1261-1274 Langues : Anglais (eng) Mots-clés : Autism  Female  Girl  Adolescence  Qualitative  Family systems Index. décimale : PER Périodiques Résumé : This study investigates the experiences of adolescent girls with autism spectrum disorders (ASD) during adolescence. Semi-structured interviews were conducted with three mother–daughter dyads and two additional mothers. A range of issues were highlighted covering physical, emotional, social and sexual domains. Some of these issues were similar to those experienced by boys with ASD during adolescence, such as negative implications of late diagnosis, challenges of transitioning to and coping with high school, ‘hands-on’ role of parents into adolescence, difficulties adjusting to the increased demands of adolescent hygiene routines, and the importance of learning personal boundaries in interactions with others. Other issues discussed were of particular relevance to adolescent girls with ASD, such as difficulties socialising with neurotypically developing girls, sex-specific puberty issues, and sexual vulnerabilities. This study highlights an important research area and is a preliminary step towards understanding the experiences of adolescent girls with ASD and their families. En ligne : http://dx.doi.org/10.1007/s10803-013-1985-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=233 [article] Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence [Texte imprimé et/ou numérique] / Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Peter CAPUTI, Auteur ; Christopher A. MAGEE, Auteur . - p.1261-1274. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 44-6 (June 2014) . - p.1261-1274 Mots-clés : Autism  Female  Girl  Adolescence  Qualitative  Family systems Index. décimale : PER Périodiques Résumé : This study investigates the experiences of adolescent girls with autism spectrum disorders (ASD) during adolescence. Semi-structured interviews were conducted with three mother–daughter dyads and two additional mothers. A range of issues were highlighted covering physical, emotional, social and sexual domains. Some of these issues were similar to those experienced by boys with ASD during adolescence, such as negative implications of late diagnosis, challenges of transitioning to and coping with high school, ‘hands-on’ role of parents into adolescence, difficulties adjusting to the increased demands of adolescent hygiene routines, and the importance of learning personal boundaries in interactions with others. Other issues discussed were of particular relevance to adolescent girls with ASD, such as difficulties socialising with neurotypically developing girls, sex-specific puberty issues, and sexual vulnerabilities. This study highlights an important research area and is a preliminary step towards understanding the experiences of adolescent girls with ASD and their families. En ligne : http://dx.doi.org/10.1007/s10803-013-1985-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=233

'Coming Out' with Autism: Identity in People with an Asperger's Diagnosis After DSM-5 / Olivia SMITH in Journal of Autism and Developmental Disorders, 50-2 (February 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-2 (February 2020) . - p.592-602 Titre : 'Coming Out' with Autism: Identity in People with an Asperger's Diagnosis After DSM-5 Type de document : Texte imprimé et/ou numérique Auteurs : Olivia SMITH, Auteur ; Sandra C. JONES, Auteur Article en page(s) : p.592-602 Langues : Anglais (eng) Mots-clés : Asperger's  Dsm-5  Diagnostic category  Identity Index. décimale : PER Périodiques Résumé : Asperger's Syndrome was introduced as a separate diagnostic category in the DSM-4 (1994). Its subsequent absorption into autism spectrum disorder in the DSM-5 (2013) led to vigorous debate and concerns about the loss of the unique Asperger's identity. Existing research has identified that adults previously diagnosed with Asperger's have expressed a diverse range of opinions regarding the DSM-5 changes. This Australian study explored the role of disability identity development in responses to the change through semi-structured interviews with 12 adults diagnosed with Asperger's under the DSM-4. Their different views did not appear to be a function of demographic variables; a connection was identified between participants' views of the change and differing stages of integration with the Asperger's and/or autism identities. En ligne : http://dx.doi.org/10.1007/s10803-019-04294-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=416 [article] 'Coming Out' with Autism: Identity in People with an Asperger's Diagnosis After DSM-5 [Texte imprimé et/ou numérique] / Olivia SMITH, Auteur ; Sandra C. JONES, Auteur . - p.592-602. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-2 (February 2020) . - p.592-602 Mots-clés : Asperger's  Dsm-5  Diagnostic category  Identity Index. décimale : PER Périodiques Résumé : Asperger's Syndrome was introduced as a separate diagnostic category in the DSM-4 (1994). Its subsequent absorption into autism spectrum disorder in the DSM-5 (2013) led to vigorous debate and concerns about the loss of the unique Asperger's identity. Existing research has identified that adults previously diagnosed with Asperger's have expressed a diverse range of opinions regarding the DSM-5 changes. This Australian study explored the role of disability identity development in responses to the change through semi-structured interviews with 12 adults diagnosed with Asperger's under the DSM-4. Their different views did not appear to be a function of demographic variables; a connection was identified between participants' views of the change and differing stages of integration with the Asperger's and/or autism identities. En ligne : http://dx.doi.org/10.1007/s10803-019-04294-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=416

Families Living With Autism Spectrum Disorder: Roles and Responsibilities of Adolescent Sisters / Elizabeth K. CRIDLAND in Focus on Autism and Other Developmental Disabilities, 31-3 (September 2016)  

Public ISBD [article]  inFocus on Autism and Other Developmental Disabilities > 31-3 (September 2016) . - p.196-207 Titre : Families Living With Autism Spectrum Disorder: Roles and Responsibilities of Adolescent Sisters Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Gerard STOYLES, Auteur ; Peter CAPUTI, Auteur ; Christopher A. MAGEE, Auteur Article en page(s) : p.196-207 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  siblings  family  support systems  high school  adolescence  sister Index. décimale : PER Périodiques Résumé : There is currently a limited understanding of adolescent sibling relationships where Autism Spectrum Disorder (ASD) is present. This research gap remains despite preliminary findings suggesting that neurotypically developing (NTD) siblings undertake extra caregiving responsibilities and experience differential treatment from family members. Using a Family Systems approach, this qualitative study investigated NTD adolescent sisters’ roles and responsibilities for their younger adolescent brother with ASD from the perspectives of 11 family members (including NTD sisters, brothers with ASD, mothers, and fathers). Findings indicate the sisters undertook various caregiving roles and responsibilities, particularly at school, which had both positive and negative influences on the family system. Additionally, sisters perceived they undertook unfair household responsibilities, received reduced parental attention, and desired both distance from and engagement with their families. These perceptions varied amongst other family members. Implications of these findings and strategies for best supporting adolescent NTD siblings are discussed. En ligne : http://dx.doi.org/10.1177/1088357615583466 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292 [article] Families Living With Autism Spectrum Disorder: Roles and Responsibilities of Adolescent Sisters [Texte imprimé et/ou numérique] / Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Gerard STOYLES, Auteur ; Peter CAPUTI, Auteur ; Christopher A. MAGEE, Auteur . - p.196-207. Langues : Anglais (eng) in Focus on Autism and Other Developmental Disabilities > 31-3 (September 2016) . - p.196-207 Mots-clés : autism spectrum disorders  siblings  family  support systems  high school  adolescence  sister Index. décimale : PER Périodiques Résumé : There is currently a limited understanding of adolescent sibling relationships where Autism Spectrum Disorder (ASD) is present. This research gap remains despite preliminary findings suggesting that neurotypically developing (NTD) siblings undertake extra caregiving responsibilities and experience differential treatment from family members. Using a Family Systems approach, this qualitative study investigated NTD adolescent sisters’ roles and responsibilities for their younger adolescent brother with ASD from the perspectives of 11 family members (including NTD sisters, brothers with ASD, mothers, and fathers). Findings indicate the sisters undertook various caregiving roles and responsibilities, particularly at school, which had both positive and negative influences on the family system. Additionally, sisters perceived they undertook unfair household responsibilities, received reduced parental attention, and desired both distance from and engagement with their families. These perceptions varied amongst other family members. Implications of these findings and strategies for best supporting adolescent NTD siblings are discussed. En ligne : http://dx.doi.org/10.1177/1088357615583466 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292

Family-focused autism spectrum disorder research: A review of the utility of family systems approaches / Elizabeth K. CRIDLAND in Autism, 18-3 (April 2014)  

Public ISBD [article]  inAutism > 18-3 (April 2014) . - p.213-222 Titre : Family-focused autism spectrum disorder research: A review of the utility of family systems approaches Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Christopher A. MAGEE, Auteur ; Peter CAPUTI, Auteur Article en page(s) : p.213-222 Langues : Anglais (eng) Mots-clés : ambiguous loss  autism spectrum disorders  dyad  family functioning  family systems  holistic approaches  resilience  subsystem  support services  stress  traumatic growth Index. décimale : PER Périodiques Résumé : A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed. En ligne : http://dx.doi.org/10.1177/1362361312472261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=229 [article] Family-focused autism spectrum disorder research: A review of the utility of family systems approaches [Texte imprimé et/ou numérique] / Elizabeth K. CRIDLAND, Auteur ; Sandra C. JONES, Auteur ; Christopher A. MAGEE, Auteur ; Peter CAPUTI, Auteur . - p.213-222. Langues : Anglais (eng) in Autism > 18-3 (April 2014) . - p.213-222 Mots-clés : ambiguous loss  autism spectrum disorders  dyad  family functioning  family systems  holistic approaches  resilience  subsystem  support services  stress  traumatic growth Index. décimale : PER Périodiques Résumé : A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed. En ligne : http://dx.doi.org/10.1177/1362361312472261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=229

'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

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