Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals / L. CRANE in Journal of Autism and Developmental Disorders, 48-11 (November 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-11 (November 2018) . - p.3761-3772 Titre : Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals Type de document : Texte imprimé et/ou numérique Auteurs : L. CRANE, Auteur ; R. BATTY, Auteur ; H. ADEYINKA, Auteur ; L. GODDARD, Auteur ; L. A. HENRY, Auteur ; E. L. HILL, Auteur Article en page(s) : p.3761-3772 Langues : Anglais (eng) Mots-clés : Adults  Autism  Diagnosis  Parents  Professionals  Support Index. décimale : PER Périodiques Résumé : Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision. En ligne : http://dx.doi.org/10.1007/s10803-018-3639-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 [article] Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals [Texte imprimé et/ou numérique] / L. CRANE, Auteur ; R. BATTY, Auteur ; H. ADEYINKA, Auteur ; L. GODDARD, Auteur ; L. A. HENRY, Auteur ; E. L. HILL, Auteur . - p.3761-3772. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-11 (November 2018) . - p.3761-3772 Mots-clés : Adults  Autism  Diagnosis  Parents  Professionals  Support Index. décimale : PER Périodiques Résumé : Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision. En ligne : http://dx.doi.org/10.1007/s10803-018-3639-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370

"Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers and their educators / J. HALSALL in Autism, 25-7 (October 2021)  

Public ISBD [article]  inAutism > 25-7 (October 2021) . - p.2074-2086 Titre : "Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers and their educators Type de document : Texte imprimé et/ou numérique Auteurs : J. HALSALL, Auteur ; C. CLARKE, Auteur ; L. CRANE, Auteur Article en page(s) : p.2074-2086 Langues : Anglais (eng) Mots-clés : Adolescent  Anxiety Disorders  Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Child  Female  Humans  Mainstreaming, Education  Mothers  Schools  autism  camouflaging  education  females  resource bases  special educational needs  of interest with respect to the research, authorship and/or publication of this  article. Index. décimale : PER Périodiques Résumé : There are a range of different types of schools that support children diagnosed with autism, including mainstream schools (where pupils are taught in general classrooms) and specialist schools (where pupils are exclusively taught alongside other children with special educational needs). An intermediary option involves resource bases attached to mainstream schools, which enable children to transition between mainstream and specialist educational settings. Autistic girls use a variety of strategies to negotiate the expectations and demands of school life. One of these strategies is known as camouflaging. This involves 'hiding' autism-based behaviours and developing ways to manage social situations, with the aim of fitting in with others. Research has shown that camouflaging can help to meet social expectations and friendships, but it can also result in challenges, including exhaustion and anxiety. In this study, we conducted detailed interviews with eight autistic girls, their parents and their school staff. The results showed that the girls tried to use camouflaging strategies to hide their autism and learning needs, especially within mainstream classrooms. Their camouflaging was often unsuccessful, which affected their relationships and sense of belonging. They also found camouflaging exhausting and distressing, which may (when combined with the demands of the classroom) affect their relationships, learning and mental health. This research provides important implications for supporting autistic girls who attend resource bases. These focus around increasing awareness of camouflaging and ways to support autistic girls, so they are included and able to fully participate and learn within school. En ligne : http://dx.doi.org/10.1177/13623613211012819 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] "Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers and their educators [Texte imprimé et/ou numérique] / J. HALSALL, Auteur ; C. CLARKE, Auteur ; L. CRANE, Auteur . - p.2074-2086. Langues : Anglais (eng) in Autism > 25-7 (October 2021) . - p.2074-2086 Mots-clés : Adolescent  Anxiety Disorders  Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Child  Female  Humans  Mainstreaming, Education  Mothers  Schools  autism  camouflaging  education  females  resource bases  special educational needs  of interest with respect to the research, authorship and/or publication of this  article. Index. décimale : PER Périodiques Résumé : There are a range of different types of schools that support children diagnosed with autism, including mainstream schools (where pupils are taught in general classrooms) and specialist schools (where pupils are exclusively taught alongside other children with special educational needs). An intermediary option involves resource bases attached to mainstream schools, which enable children to transition between mainstream and specialist educational settings. Autistic girls use a variety of strategies to negotiate the expectations and demands of school life. One of these strategies is known as camouflaging. This involves 'hiding' autism-based behaviours and developing ways to manage social situations, with the aim of fitting in with others. Research has shown that camouflaging can help to meet social expectations and friendships, but it can also result in challenges, including exhaustion and anxiety. In this study, we conducted detailed interviews with eight autistic girls, their parents and their school staff. The results showed that the girls tried to use camouflaging strategies to hide their autism and learning needs, especially within mainstream classrooms. Their camouflaging was often unsuccessful, which affected their relationships and sense of belonging. They also found camouflaging exhausting and distressing, which may (when combined with the demands of the classroom) affect their relationships, learning and mental health. This research provides important implications for supporting autistic girls who attend resource bases. These focus around increasing awareness of camouflaging and ways to support autistic girls, so they are included and able to fully participate and learn within school. En ligne : http://dx.doi.org/10.1177/13623613211012819 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

"Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation / R. STEWARD in Journal of Autism and Developmental Disorders, 48-12 (December 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4287-4292 Titre : "Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation Type de document : Texte imprimé et/ou numérique Auteurs : R. STEWARD, Auteur ; L. CRANE, Auteur ; E. MAIRI ROY, Auteur ; A. REMINGTON, Auteur ; E. PELLICANO, Auteur Article en page(s) : p.4287-4292 Langues : Anglais (eng) Mots-clés : Autism  Menarche  Menstruation  Self-regulation  Sensory sensitivities  Women's health Index. décimale : PER Périodiques Résumé : Although menarche and menstruation are perceived to be overwhelmingly negative events for developmentally-disabled women, women's health issues remain under-researched in autism. Here, we conducted a preliminary investigation of the experiences of post-menarcheal autistic (n = 123) and non-autistic (n = 114) respondents to a brief online survey. Although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct-and sometimes-distressing-issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives. These initial findings call for systematic research on the potential causes, correlates and consequences of menstrual-related problems in autistic individuals-across the spectrum and the lifespan. En ligne : http://dx.doi.org/10.1007/s10803-018-3664-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371 [article] "Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation [Texte imprimé et/ou numérique] / R. STEWARD, Auteur ; L. CRANE, Auteur ; E. MAIRI ROY, Auteur ; A. REMINGTON, Auteur ; E. PELLICANO, Auteur . - p.4287-4292. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4287-4292 Mots-clés : Autism  Menarche  Menstruation  Self-regulation  Sensory sensitivities  Women's health Index. décimale : PER Périodiques Résumé : Although menarche and menstruation are perceived to be overwhelmingly negative events for developmentally-disabled women, women's health issues remain under-researched in autism. Here, we conducted a preliminary investigation of the experiences of post-menarcheal autistic (n = 123) and non-autistic (n = 114) respondents to a brief online survey. Although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct-and sometimes-distressing-issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives. These initial findings call for systematic research on the potential causes, correlates and consequences of menstrual-related problems in autistic individuals-across the spectrum and the lifespan. En ligne : http://dx.doi.org/10.1007/s10803-018-3664-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371

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 et/ou numérique Auteurs : Sue FLETCHER-WATSON, Auteur ; J. ADAMS, Auteur ; K. BROOK, Auteur ; Tony CHARMAN, Auteur ; L. CRANE, Auteur ; J. CUSACK, Auteur ; S. LEEKAM, Auteur ; D. MILTON, Auteur ; Jeremy R. PARR, Auteur ; E. 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 et/ou numérique] / Sue FLETCHER-WATSON, Auteur ; J. ADAMS, Auteur ; K. BROOK, Auteur ; Tony CHARMAN, Auteur ; L. CRANE, Auteur ; J. CUSACK, Auteur ; S. LEEKAM, Auteur ; D. MILTON, Auteur ; Jeremy R. PARR, Auteur ; E. 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

Parents' views and experiences of talking about autism with their children / L. CRANE in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.1969-1981 Titre : Parents' views and experiences of talking about autism with their children Type de document : Texte imprimé et/ou numérique Auteurs : L. CRANE, Auteur ; L. JONES, Auteur ; R. PROSSER, Auteur ; M. TAGHRIZI, Auteur ; E. PELLICANO, Auteur Article en page(s) : p.1969-1981 Langues : Anglais (eng) Mots-clés : acceptance  autism  awareness  diagnosis  disclosure  parents Index. décimale : PER Périodiques Résumé : The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child's diagnosis. Yet, research into parents' subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents' experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents (n = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents (n = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process (n = 319, 84.2%) and felt confident in talking about autism with their children (n = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future (n = 100, 73.5%), felt confident in doing so (n = 95, 70.9%) and were satisfied with their decision (n = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children's needs, while acknowledging that disclosure could often be challenging for parents. En ligne : http://dx.doi.org/10.1177/1362361319836257 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] Parents' views and experiences of talking about autism with their children [Texte imprimé et/ou numérique] / L. CRANE, Auteur ; L. JONES, Auteur ; R. PROSSER, Auteur ; M. TAGHRIZI, Auteur ; E. PELLICANO, Auteur . - p.1969-1981. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.1969-1981 Mots-clés : acceptance  autism  awareness  diagnosis  disclosure  parents Index. décimale : PER Périodiques Résumé : The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child's diagnosis. Yet, research into parents' subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents' experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents (n = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents (n = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process (n = 319, 84.2%) and felt confident in talking about autism with their children (n = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future (n = 100, 73.5%), felt confident in doing so (n = 95, 70.9%) and were satisfied with their decision (n = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children's needs, while acknowledging that disclosure could often be challenging for parents. En ligne : http://dx.doi.org/10.1177/1362361319836257 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

Participatory autism research: Early career and established researchers' views and experiences / H. PICKARD in Autism, 26-1 (January 2022)  

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'People should be allowed to do what they like': Autistic adults' views and experiences of stimming / Steven K. KAPP in Autism, 23-7 (October 2019)  

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A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers / E. HAN in Autism, 25-8 (November 2021)  

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Response to 'No Evidence Against Sketch Reinstatement of Context, Verbal Labels or Registered Intermediaries' / L. A. HENRY in Journal of Autism and Developmental Disorders, 48-7 (July 2018)  

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Self-reported camouflaging behaviours used by autistic adults during everyday social interactions / J. COOK in Autism, 26-2 (February 2022)  

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'Something needs to change': Mental health experiences of young autistic adults in England / L. CRANE in Autism, 23-2 (February 2019)  

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A systematic review on autistic people's experiences of stigma and coping strategies / E. HAN in Autism Research, 15-1 (January 2022)  

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Understanding and awareness of autism among Somali parents living in the United Kingdom / A. M. HUSSEIN in Autism, 23-6 (August 2019)  

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