Addressing the Educational Needs of Children with Williams Syndrome: A Rather Neglected Area of Research? / Olympia PALIKARA in Journal of Autism and Developmental Disorders, 48-9 (September 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-9 (September 2018) . - p.3256-3259 Titre : Addressing the Educational Needs of Children with Williams Syndrome: A Rather Neglected Area of Research? Type de document : Texte imprimé et/ou numérique Auteurs : Olympia PALIKARA, Auteur ; Maria ASHWORTH, Auteur ; J. VAN HERWEGEN, Auteur Article en page(s) : p.3256-3259 Langues : Anglais (eng) Mots-clés : Academic achievements  Educational provision  Interventions  Transition  Williams syndrome Index. décimale : PER Périodiques Résumé : Williams syndrome (WS) is a rare neurodevelopmental disorder associated with physical health problems, limitations in cognitive abilities and increased risk of mental health difficulties. This profile of complex needs may make it challenging to support children with WS in schools. Surprisingly, in the current international move for inclusion, limited research exists on the educational provision and academic achievements of children with WS, including the non-existing literature on their voices and the perspectives of key stakeholders. This letter calls for additional research on the risk and protective factors associated with the educational outcomes of these children, the perspectives of the children themselves and the development of the evidence-base about the effectiveness of education intervention programs. En ligne : http://dx.doi.org/10.1007/s10803-018-3578-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=368 [article] Addressing the Educational Needs of Children with Williams Syndrome: A Rather Neglected Area of Research? [Texte imprimé et/ou numérique] / Olympia PALIKARA, Auteur ; Maria ASHWORTH, Auteur ; J. VAN HERWEGEN, Auteur . - p.3256-3259. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-9 (September 2018) . - p.3256-3259 Mots-clés : Academic achievements  Educational provision  Interventions  Transition  Williams syndrome Index. décimale : PER Périodiques Résumé : Williams syndrome (WS) is a rare neurodevelopmental disorder associated with physical health problems, limitations in cognitive abilities and increased risk of mental health difficulties. This profile of complex needs may make it challenging to support children with WS in schools. Surprisingly, in the current international move for inclusion, limited research exists on the educational provision and academic achievements of children with WS, including the non-existing literature on their voices and the perspectives of key stakeholders. This letter calls for additional research on the risk and protective factors associated with the educational outcomes of these children, the perspectives of the children themselves and the development of the evidence-base about the effectiveness of education intervention programs. En ligne : http://dx.doi.org/10.1007/s10803-018-3578-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=368

Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults / Caroline HEARST ; Maria ASHWORTH ; Jade DAVIES in Autism & Developmental Language Impairments, 8 (January-December 2023)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 8 (January-December 2023) Titre : Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur Langues : Anglais (eng) Mots-clés : Post-diagnostic support  peer group  psychoeducation  telehealth  autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 [article] Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults [Texte imprimé et/ou numérique] / Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 8 (January-December 2023) Mots-clés : Post-diagnostic support  peer group  psychoeducation  telehealth  autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518

Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme / Laura CRANE in Journal of Autism and Developmental Disorders, 51-3 (March 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.892-905 Titre : Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme Type de document : Texte imprimé et/ou numérique Auteurs : Laura CRANE, Auteur ; Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur ; Elisabeth L HILL, Auteur Article en page(s) : p.892-905 Langues : Anglais (eng) Mots-clés : Adults  Autism  Autistic-led  Diagnosis  Peer support  Post-diagnostic support Index. décimale : PER Périodiques Résumé : Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic. En ligne : http://dx.doi.org/10.1007/s10803-020-04486-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443 [article] Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme [Texte imprimé et/ou numérique] / Laura CRANE, Auteur ; Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur ; Elisabeth L HILL, Auteur . - p.892-905. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.892-905 Mots-clés : Adults  Autism  Autistic-led  Diagnosis  Peer support  Post-diagnostic support Index. décimale : PER Périodiques Résumé : Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic. En ligne : http://dx.doi.org/10.1007/s10803-020-04486-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443

The Underreporting of Vision Problems in Statutory Documents of Children with Williams Syndrome and Down Syndrome / Hannah HARVEY in Journal of Autism and Developmental Disorders, 50-12 (December 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-12 (December 2020) . - p.4553-4556 Titre : The Underreporting of Vision Problems in Statutory Documents of Children with Williams Syndrome and Down Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Hannah HARVEY, Auteur ; Maria ASHWORTH, Auteur ; Olympia PALIKARA, Auteur ; Jo VAN HERWEGEN, Auteur Article en page(s) : p.4553-4556 Langues : Anglais (eng) Mots-clés : Down syndrome  Neurodevelopmental disorders  Special educational needs  Vision  Williams syndrome Index. décimale : PER Périodiques Résumé : Vision problems can lead to negative developmental outcomes. Children with Williams syndrome and Down syndrome are at higher risk of vision problems, and these are less likely to be detected due to diagnostic overshadowing and difficulty accessing eye-care. Education, Health and Care (EHC) plans are statutory documents, introduced by the Children and Families Act 2014 in England, with the intention of integrating provision across these domains. Vision issues should be reported in these plans, and recommendations made about appropriate adjustments for them. We analysed the EHC plans from 53 children with Down or Williams syndrome. Our results showed significant underreporting, especially for children with Williams syndrome, and little explanation of what adjustments should be made. We also report pockets of good practice. En ligne : http://dx.doi.org/10.1007/s10803-020-04520-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434 [article] The Underreporting of Vision Problems in Statutory Documents of Children with Williams Syndrome and Down Syndrome [Texte imprimé et/ou numérique] / Hannah HARVEY, Auteur ; Maria ASHWORTH, Auteur ; Olympia PALIKARA, Auteur ; Jo VAN HERWEGEN, Auteur . - p.4553-4556. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-12 (December 2020) . - p.4553-4556 Mots-clés : Down syndrome  Neurodevelopmental disorders  Special educational needs  Vision  Williams syndrome Index. décimale : PER Périodiques Résumé : Vision problems can lead to negative developmental outcomes. Children with Williams syndrome and Down syndrome are at higher risk of vision problems, and these are less likely to be detected due to diagnostic overshadowing and difficulty accessing eye-care. Education, Health and Care (EHC) plans are statutory documents, introduced by the Children and Families Act 2014 in England, with the intention of integrating provision across these domains. Vision issues should be reported in these plans, and recommendations made about appropriate adjustments for them. We analysed the EHC plans from 53 children with Down or Williams syndrome. Our results showed significant underreporting, especially for children with Williams syndrome, and little explanation of what adjustments should be made. We also report pockets of good practice. En ligne : http://dx.doi.org/10.1007/s10803-020-04520-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434

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