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Making the future together: Shaping autism research through meaningful participation / Sue FLETCHER-WATSON in Autism, 23-4 (May 2019)
[article]
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
in Autism > 23-4 (May 2019) . - p.943-953[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 Predictors of Ascertainment of Autism Spectrum Disorders Across Nine US Communities / Sydney PETTYGROVE in Journal of Autism and Developmental Disorders, 43-8 (August 2013)
[article]
Titre : Predictors of Ascertainment of Autism Spectrum Disorders Across Nine US Communities Type de document : Texte imprimé et/ou numérique Auteurs : Sydney PETTYGROVE, Auteur ; Judith PINBOROUGH-ZIMMERMAN, Auteur ; F. John MEANEY, Auteur ; Kim NAARDEN BRAUN, Auteur ; Joyce S. NICHOLAS, Auteur ; Lisa MILLER, Auteur ; Judith MILLER, Auteur ; Catherine RICE, Auteur Article en page(s) : p.1867-1879 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders Education Epidemiology Surveillance Methods Intellectual disability Index. décimale : PER Périodiques Résumé : Autism spectrum disorders (ASD) prevalence estimates derived from a single data source under-identify children and provide a biased profile of case characteristics. We analyzed characteristics of 1,919 children with ASD identified by the Autism and Developmental Disabilities Monitoring Network. Cases ascertained only at education sources were compared to those identified at health sources. 38 % were education-only. These were older at their earliest evaluation (54.5 vs. 42.0 months, p 0.001) and earliest ASD diagnosis (62 vs. 53 months, p 0.001). More lived in census blocks with lower adult education (p 0.001). Lower educational attainment of adults in census blocks of residence of education-only cases suggests disparities in access to clinical services with the schools providing crucial services to many families. En ligne : http://dx.doi.org/10.1007/s10803-012-1732-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=205
in Journal of Autism and Developmental Disorders > 43-8 (August 2013) . - p.1867-1879[article] Predictors of Ascertainment of Autism Spectrum Disorders Across Nine US Communities [Texte imprimé et/ou numérique] / Sydney PETTYGROVE, Auteur ; Judith PINBOROUGH-ZIMMERMAN, Auteur ; F. John MEANEY, Auteur ; Kim NAARDEN BRAUN, Auteur ; Joyce S. NICHOLAS, Auteur ; Lisa MILLER, Auteur ; Judith MILLER, Auteur ; Catherine RICE, Auteur . - p.1867-1879.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 43-8 (August 2013) . - p.1867-1879
Mots-clés : Autism spectrum disorders Education Epidemiology Surveillance Methods Intellectual disability Index. décimale : PER Périodiques Résumé : Autism spectrum disorders (ASD) prevalence estimates derived from a single data source under-identify children and provide a biased profile of case characteristics. We analyzed characteristics of 1,919 children with ASD identified by the Autism and Developmental Disabilities Monitoring Network. Cases ascertained only at education sources were compared to those identified at health sources. 38 % were education-only. These were older at their earliest evaluation (54.5 vs. 42.0 months, p 0.001) and earliest ASD diagnosis (62 vs. 53 months, p 0.001). More lived in census blocks with lower adult education (p 0.001). Lower educational attainment of adults in census blocks of residence of education-only cases suggests disparities in access to clinical services with the schools providing crucial services to many families. En ligne : http://dx.doi.org/10.1007/s10803-012-1732-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=205