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Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research

As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase “Nothing about us without us,” illustrating the idea that autistic people should be centered in all conversations regarding autism. However, in a large portion of autism research, autistic pe...

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Autores principales: Kaplan-Kahn, Elizabeth A., Caplan, Reid
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10466038/
https://www.ncbi.nlm.nih.gov/pubmed/37654987
http://dx.doi.org/10.3389/fpsyt.2023.1248247
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author Kaplan-Kahn, Elizabeth A.
Caplan, Reid
author_facet Kaplan-Kahn, Elizabeth A.
Caplan, Reid
author_sort Kaplan-Kahn, Elizabeth A.
collection PubMed
description As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase “Nothing about us without us,” illustrating the idea that autistic people should be centered in all conversations regarding autism. However, in a large portion of autism research, autistic people are still not meaningfully engaged throughout the research process, leading to continued stigma in research through biased methods. Thus, stigma about autism influences not only the content of autism research, but the ways in which neurotypical people conduct research alongside (or without) autistic people, ultimately resulting in less valid conclusions or research that actively harms the autistic community. One way to address this stigma is through involving autistic individuals as equal partners in the research process, such as by including autistic co-interviewers in qualitative studies of autistic people. In this perspectives piece, we will highlight the benefits of participatory research practices within qualitative research. Furthermore, we will outline methods for conducting co-interviews with autistic research partners and share insights from our experiences implementing this practice. We hope this piece provides researchers the practical resources and inspiration to continue working toward decreasing the stigma surrounding autism in research spaces.
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spelling pubmed-104660382023-08-31 Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research Kaplan-Kahn, Elizabeth A. Caplan, Reid Front Psychiatry Psychiatry As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase “Nothing about us without us,” illustrating the idea that autistic people should be centered in all conversations regarding autism. However, in a large portion of autism research, autistic people are still not meaningfully engaged throughout the research process, leading to continued stigma in research through biased methods. Thus, stigma about autism influences not only the content of autism research, but the ways in which neurotypical people conduct research alongside (or without) autistic people, ultimately resulting in less valid conclusions or research that actively harms the autistic community. One way to address this stigma is through involving autistic individuals as equal partners in the research process, such as by including autistic co-interviewers in qualitative studies of autistic people. In this perspectives piece, we will highlight the benefits of participatory research practices within qualitative research. Furthermore, we will outline methods for conducting co-interviews with autistic research partners and share insights from our experiences implementing this practice. We hope this piece provides researchers the practical resources and inspiration to continue working toward decreasing the stigma surrounding autism in research spaces. Frontiers Media S.A. 2023-08-15 /pmc/articles/PMC10466038/ /pubmed/37654987 http://dx.doi.org/10.3389/fpsyt.2023.1248247 Text en Copyright © 2023 Kaplan-Kahn and Caplan. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Psychiatry
Kaplan-Kahn, Elizabeth A.
Caplan, Reid
Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title_full Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title_fullStr Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title_full_unstemmed Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title_short Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
title_sort combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research
topic Psychiatry
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10466038/
https://www.ncbi.nlm.nih.gov/pubmed/37654987
http://dx.doi.org/10.3389/fpsyt.2023.1248247
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