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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...
Autores principales: | , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2019
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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. |
format | Online Article Text |
id | pubmed-6779014 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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