Understanding profound autism: implications for stigma and supports
- Autores
- Clarke, Elaine B.; McCauley, James B.; Lutz, Amy; Gotelli, Marina María; Sheinkopf, Stephen J.; Lord, Catherine
- Año de publicación
- 2024
- Idioma
- inglés
- Tipo de recurso
- artículo
- Estado
- versión publicada
- Descripción
- Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families.Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples—three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults.Results: The prevalence of profound autism varied widely across the six samples—from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma.Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.
Fil: Clarke, Elaine B.. University of California at Los Angeles; Estados Unidos
Fil: McCauley, James B.. St. Mary's College Of California; Estados Unidos
Fil: Lutz, Amy. University of Pennsylvania; Estados Unidos
Fil: Gotelli, Marina María. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Fundación Brincar por un Autismo Feliz; Argentina
Fil: Sheinkopf, Stephen J.. University of Missouri; Estados Unidos
Fil: Lord, Catherine. University of California at Los Angeles; Estados Unidos - Materia
-
AUTISM SPECTRUM DISORDER
PROFOUND AUTISM
STIGMA AND AWARENESS
PREVALENCE
MIXED METHOD
AUTISTIC ADULTS
QUALITATIVE INTERVIEW ANALYSIS - Nivel de accesibilidad
- acceso abierto
- Condiciones de uso
- https://creativecommons.org/licenses/by/2.5/ar/
- Repositorio
- Institución
- Consejo Nacional de Investigaciones Científicas y Técnicas
- OAI Identificador
- oai:ri.conicet.gov.ar:11336/231675
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Understanding profound autism: implications for stigma and supportsClarke, Elaine B.McCauley, James B.Lutz, AmyGotelli, Marina MaríaSheinkopf, Stephen J.Lord, CatherineAUTISM SPECTRUM DISORDERPROFOUND AUTISMSTIGMA AND AWARENESSPREVALENCEMIXED METHODAUTISTIC ADULTSQUALITATIVE INTERVIEW ANALYSIShttps://purl.org/becyt/ford/5.1https://purl.org/becyt/ford/5Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families.Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples—three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults.Results: The prevalence of profound autism varied widely across the six samples—from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma.Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.Fil: Clarke, Elaine B.. University of California at Los Angeles; Estados UnidosFil: McCauley, James B.. St. Mary's College Of California; Estados UnidosFil: Lutz, Amy. University of Pennsylvania; Estados UnidosFil: Gotelli, Marina María. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Fundación Brincar por un Autismo Feliz; ArgentinaFil: Sheinkopf, Stephen J.. University of Missouri; Estados UnidosFil: Lord, Catherine. University of California at Los Angeles; Estados UnidosFrontiers Media2024-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfapplication/pdfhttp://hdl.handle.net/11336/231675Clarke, Elaine B.; McCauley, James B.; Lutz, Amy; Gotelli, Marina María; Sheinkopf, Stephen J.; et al.; Understanding profound autism: implications for stigma and supports; Frontiers Media; Frontiers in Psychiatry; 15; 1-2024; 1-151664-0640CONICET DigitalCONICETenginfo:eu-repo/semantics/altIdentifier/url/https://www.frontiersin.org/articles/10.3389/fpsyt.2024.1287096/fullinfo:eu-repo/semantics/altIdentifier/doi/10.3389/fpsyt.2024.1287096info:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by/2.5/ar/reponame:CONICET Digital (CONICET)instname:Consejo Nacional de Investigaciones Científicas y Técnicas2025-09-03T10:04:18Zoai:ri.conicet.gov.ar:11336/231675instacron:CONICETInstitucionalhttp://ri.conicet.gov.ar/Organismo científico-tecnológicoNo correspondehttp://ri.conicet.gov.ar/oai/requestdasensio@conicet.gov.ar; lcarlino@conicet.gov.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:34982025-09-03 10:04:18.715CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicasfalse |
dc.title.none.fl_str_mv |
Understanding profound autism: implications for stigma and supports |
title |
Understanding profound autism: implications for stigma and supports |
spellingShingle |
Understanding profound autism: implications for stigma and supports Clarke, Elaine B. AUTISM SPECTRUM DISORDER PROFOUND AUTISM STIGMA AND AWARENESS PREVALENCE MIXED METHOD AUTISTIC ADULTS QUALITATIVE INTERVIEW ANALYSIS |
title_short |
Understanding profound autism: implications for stigma and supports |
title_full |
Understanding profound autism: implications for stigma and supports |
title_fullStr |
Understanding profound autism: implications for stigma and supports |
title_full_unstemmed |
Understanding profound autism: implications for stigma and supports |
title_sort |
Understanding profound autism: implications for stigma and supports |
dc.creator.none.fl_str_mv |
Clarke, Elaine B. McCauley, James B. Lutz, Amy Gotelli, Marina María Sheinkopf, Stephen J. Lord, Catherine |
author |
Clarke, Elaine B. |
author_facet |
Clarke, Elaine B. McCauley, James B. Lutz, Amy Gotelli, Marina María Sheinkopf, Stephen J. Lord, Catherine |
author_role |
author |
author2 |
McCauley, James B. Lutz, Amy Gotelli, Marina María Sheinkopf, Stephen J. Lord, Catherine |
author2_role |
author author author author author |
dc.subject.none.fl_str_mv |
AUTISM SPECTRUM DISORDER PROFOUND AUTISM STIGMA AND AWARENESS PREVALENCE MIXED METHOD AUTISTIC ADULTS QUALITATIVE INTERVIEW ANALYSIS |
topic |
AUTISM SPECTRUM DISORDER PROFOUND AUTISM STIGMA AND AWARENESS PREVALENCE MIXED METHOD AUTISTIC ADULTS QUALITATIVE INTERVIEW ANALYSIS |
purl_subject.fl_str_mv |
https://purl.org/becyt/ford/5.1 https://purl.org/becyt/ford/5 |
dc.description.none.fl_txt_mv |
Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families.Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples—three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults.Results: The prevalence of profound autism varied widely across the six samples—from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma.Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course. Fil: Clarke, Elaine B.. University of California at Los Angeles; Estados Unidos Fil: McCauley, James B.. St. Mary's College Of California; Estados Unidos Fil: Lutz, Amy. University of Pennsylvania; Estados Unidos Fil: Gotelli, Marina María. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Fundación Brincar por un Autismo Feliz; Argentina Fil: Sheinkopf, Stephen J.. University of Missouri; Estados Unidos Fil: Lord, Catherine. University of California at Los Angeles; Estados Unidos |
description |
Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families.Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples—three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults.Results: The prevalence of profound autism varied widely across the six samples—from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma.Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course. |
publishDate |
2024 |
dc.date.none.fl_str_mv |
2024-01 |
dc.type.none.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion http://purl.org/coar/resource_type/c_6501 info:ar-repo/semantics/articulo |
format |
article |
status_str |
publishedVersion |
dc.identifier.none.fl_str_mv |
http://hdl.handle.net/11336/231675 Clarke, Elaine B.; McCauley, James B.; Lutz, Amy; Gotelli, Marina María; Sheinkopf, Stephen J.; et al.; Understanding profound autism: implications for stigma and supports; Frontiers Media; Frontiers in Psychiatry; 15; 1-2024; 1-15 1664-0640 CONICET Digital CONICET |
url |
http://hdl.handle.net/11336/231675 |
identifier_str_mv |
Clarke, Elaine B.; McCauley, James B.; Lutz, Amy; Gotelli, Marina María; Sheinkopf, Stephen J.; et al.; Understanding profound autism: implications for stigma and supports; Frontiers Media; Frontiers in Psychiatry; 15; 1-2024; 1-15 1664-0640 CONICET Digital CONICET |
dc.language.none.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
info:eu-repo/semantics/altIdentifier/url/https://www.frontiersin.org/articles/10.3389/fpsyt.2024.1287096/full info:eu-repo/semantics/altIdentifier/doi/10.3389/fpsyt.2024.1287096 |
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https://creativecommons.org/licenses/by/2.5/ar/ |
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application/pdf application/pdf |
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Frontiers Media |
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Frontiers Media |
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dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar |
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