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Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities

Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with...

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Autores principales: Tesfaye, Rackeb, Courchesne, Valerie, Yusuf, Afiqah, Savion-Lemieux, Tal, Singh, Ilina, Shikako-Thomas, Keiko, Mirenda, Pat, Waddell, Charlotte, Smith, Isabel M, Nicholas, David, Szatmari, Peter, Bennett, Terry, Duku, Eric, Georgiades, Stelios, Kerns, Connor, Vaillancourt, Tracy, Zaidman-Zait, Anat, Zwaigenbaum, Lonnie, Elsabbagh, Mayada
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779014/
https://www.ncbi.nlm.nih.gov/pubmed/30915852
http://dx.doi.org/10.1177/1362361319831487
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author Tesfaye, Rackeb
Courchesne, Valerie
Yusuf, Afiqah
Savion-Lemieux, Tal
Singh, Ilina
Shikako-Thomas, Keiko
Mirenda, Pat
Waddell, Charlotte
Smith, Isabel M
Nicholas, David
Szatmari, Peter
Bennett, Terry
Duku, Eric
Georgiades, Stelios
Kerns, Connor
Vaillancourt, Tracy
Zaidman-Zait, Anat
Zwaigenbaum, Lonnie
Elsabbagh, Mayada
author_facet Tesfaye, Rackeb
Courchesne, Valerie
Yusuf, Afiqah
Savion-Lemieux, Tal
Singh, Ilina
Shikako-Thomas, Keiko
Mirenda, Pat
Waddell, Charlotte
Smith, Isabel M
Nicholas, David
Szatmari, Peter
Bennett, Terry
Duku, Eric
Georgiades, Stelios
Kerns, Connor
Vaillancourt, Tracy
Zaidman-Zait, Anat
Zwaigenbaum, Lonnie
Elsabbagh, Mayada
author_sort Tesfaye, Rackeb
collection PubMed
description Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions.
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spelling pubmed-67790142019-10-23 Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities Tesfaye, Rackeb Courchesne, Valerie Yusuf, Afiqah Savion-Lemieux, Tal Singh, Ilina Shikako-Thomas, Keiko Mirenda, Pat Waddell, Charlotte Smith, Isabel M Nicholas, David Szatmari, Peter Bennett, Terry Duku, Eric Georgiades, Stelios Kerns, Connor Vaillancourt, Tracy Zaidman-Zait, Anat Zwaigenbaum, Lonnie Elsabbagh, Mayada Autism Reviews Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions. SAGE Publications 2019-03-27 2019-11 /pmc/articles/PMC6779014/ /pubmed/30915852 http://dx.doi.org/10.1177/1362361319831487 Text en © The Author(s) 2019 http://www.creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Reviews
Tesfaye, Rackeb
Courchesne, Valerie
Yusuf, Afiqah
Savion-Lemieux, Tal
Singh, Ilina
Shikako-Thomas, Keiko
Mirenda, Pat
Waddell, Charlotte
Smith, Isabel M
Nicholas, David
Szatmari, Peter
Bennett, Terry
Duku, Eric
Georgiades, Stelios
Kerns, Connor
Vaillancourt, Tracy
Zaidman-Zait, Anat
Zwaigenbaum, Lonnie
Elsabbagh, Mayada
Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title_full Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title_fullStr Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title_full_unstemmed Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title_short Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities
title_sort assuming ability of youth with autism: synthesis of methods capturing the first-person perspectives of children and youth with disabilities
topic Reviews
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779014/
https://www.ncbi.nlm.nih.gov/pubmed/30915852
http://dx.doi.org/10.1177/1362361319831487
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