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
CONICET Digital (CONICET)
Institución
Consejo Nacional de Investigaciones Científicas y Técnicas
OAI Identificador
oai:ri.conicet.gov.ar:11336/231675

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network_name_str CONICET Digital (CONICET)
spelling 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
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
https://creativecommons.org/licenses/by/2.5/ar/
eu_rights_str_mv openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by/2.5/ar/
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Frontiers Media
publisher.none.fl_str_mv Frontiers Media
dc.source.none.fl_str_mv reponame:CONICET Digital (CONICET)
instname:Consejo Nacional de Investigaciones Científicas y Técnicas
reponame_str CONICET Digital (CONICET)
collection CONICET Digital (CONICET)
instname_str Consejo Nacional de Investigaciones Científicas y Técnicas
repository.name.fl_str_mv CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicas
repository.mail.fl_str_mv dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar
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