Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project

Detalhes bibliográficos
Autor(a) principal: Micai, Martina
Data de Publicação: 2021
Outros Autores: Ciaramella, Antonio, Salvitti, Tommaso, Fulceri, Francesca, Fatta, Laura Maria, Poustka, Luise, Diehm, Robert, Iskrov, Georgi, Stefanov, Rumen, Guillon, Quentin, Rogé, Bernadette, Staines, Anthony, Sweeney, Mary Rose, Boilson, Andrew Martin, Leósdóttir, Thora, Saemundsen, Evald, Moilanen, Irma, Ebeling, Hanna, Yliherva, Anneli, Gissler, Mika, Parviainen, Tarja, Tani, Pekka, Kawa, Rafal, Vicente, Astrid, Rasga, Célia, Budişteanu, Magdalena, Dale, Ian, Povey, Carol, Flores, Noelia, Jenaro, Cristina, Monroy, Maria Luisa, Primo, Patricia García, Charman, Tony, Cramer, Susanne, Warberg, Christine Kloster, Canal-Bedia, Ricardo, Posada, Manuel, Scattoni, Maria Luisa, Schendel, Diana
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.18/8068
Resumo: The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.
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spelling Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU ProjectAutism Spectrum DisorderAdultsHealthCo-occurring ConditionsServicesPerturbações do Desenvolvimento Infantil e Saúde MentalThe Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.This study was funded by the European Parliament and managed by the European Union, DGSANTE [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico (Fasc. 1S49) and I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016 (Fasc. 2S57) granted the contribution of the Italian data.Frontiers MediaRepositório Científico do Instituto Nacional de SaúdeMicai, MartinaCiaramella, AntonioSalvitti, TommasoFulceri, FrancescaFatta, Laura MariaPoustka, LuiseDiehm, RobertIskrov, GeorgiStefanov, RumenGuillon, QuentinRogé, BernadetteStaines, AnthonySweeney, Mary RoseBoilson, Andrew MartinLeósdóttir, ThoraSaemundsen, EvaldMoilanen, IrmaEbeling, HannaYliherva, AnneliGissler, MikaParviainen, TarjaTani, PekkaKawa, RafalVicente, AstridRasga, CéliaBudişteanu, MagdalenaDale, IanPovey, CarolFlores, NoeliaJenaro, CristinaMonroy, Maria LuisaPrimo, Patricia GarcíaCharman, TonyCramer, SusanneWarberg, Christine KlosterCanal-Bedia, RicardoPosada, ManuelScattoni, Maria LuisaSchendel, Diana2022-07-06T14:32:43Z2021-05-282021-05-28T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/8068engFront Psychiatry. 2021 May 28;12:614102. doi: 10.3389/fpsyt.2021.614102. eCollection 2021.1664-064010.3389/fpsyt.2021.614102info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:42:26Zoai:repositorio.insa.pt:10400.18/8068Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:42:51.379Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
title Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
spellingShingle Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
Micai, Martina
Autism Spectrum Disorder
Adults
Health
Co-occurring Conditions
Services
Perturbações do Desenvolvimento Infantil e Saúde Mental
title_short Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
title_full Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
title_fullStr Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
title_full_unstemmed Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
title_sort Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
author Micai, Martina
author_facet Micai, Martina
Ciaramella, Antonio
Salvitti, Tommaso
Fulceri, Francesca
Fatta, Laura Maria
Poustka, Luise
Diehm, Robert
Iskrov, Georgi
Stefanov, Rumen
Guillon, Quentin
Rogé, Bernadette
Staines, Anthony
Sweeney, Mary Rose
Boilson, Andrew Martin
Leósdóttir, Thora
Saemundsen, Evald
Moilanen, Irma
Ebeling, Hanna
Yliherva, Anneli
Gissler, Mika
Parviainen, Tarja
Tani, Pekka
Kawa, Rafal
Vicente, Astrid
Rasga, Célia
Budişteanu, Magdalena
Dale, Ian
Povey, Carol
Flores, Noelia
Jenaro, Cristina
Monroy, Maria Luisa
Primo, Patricia García
Charman, Tony
Cramer, Susanne
Warberg, Christine Kloster
Canal-Bedia, Ricardo
Posada, Manuel
Scattoni, Maria Luisa
Schendel, Diana
author_role author
author2 Ciaramella, Antonio
Salvitti, Tommaso
Fulceri, Francesca
Fatta, Laura Maria
Poustka, Luise
Diehm, Robert
Iskrov, Georgi
Stefanov, Rumen
Guillon, Quentin
Rogé, Bernadette
Staines, Anthony
Sweeney, Mary Rose
Boilson, Andrew Martin
Leósdóttir, Thora
Saemundsen, Evald
Moilanen, Irma
Ebeling, Hanna
Yliherva, Anneli
Gissler, Mika
Parviainen, Tarja
Tani, Pekka
Kawa, Rafal
Vicente, Astrid
Rasga, Célia
Budişteanu, Magdalena
Dale, Ian
Povey, Carol
Flores, Noelia
Jenaro, Cristina
Monroy, Maria Luisa
Primo, Patricia García
Charman, Tony
Cramer, Susanne
Warberg, Christine Kloster
Canal-Bedia, Ricardo
Posada, Manuel
Scattoni, Maria Luisa
Schendel, Diana
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Repositório Científico do Instituto Nacional de Saúde
dc.contributor.author.fl_str_mv Micai, Martina
Ciaramella, Antonio
Salvitti, Tommaso
Fulceri, Francesca
Fatta, Laura Maria
Poustka, Luise
Diehm, Robert
Iskrov, Georgi
Stefanov, Rumen
Guillon, Quentin
Rogé, Bernadette
Staines, Anthony
Sweeney, Mary Rose
Boilson, Andrew Martin
Leósdóttir, Thora
Saemundsen, Evald
Moilanen, Irma
Ebeling, Hanna
Yliherva, Anneli
Gissler, Mika
Parviainen, Tarja
Tani, Pekka
Kawa, Rafal
Vicente, Astrid
Rasga, Célia
Budişteanu, Magdalena
Dale, Ian
Povey, Carol
Flores, Noelia
Jenaro, Cristina
Monroy, Maria Luisa
Primo, Patricia García
Charman, Tony
Cramer, Susanne
Warberg, Christine Kloster
Canal-Bedia, Ricardo
Posada, Manuel
Scattoni, Maria Luisa
Schendel, Diana
dc.subject.por.fl_str_mv Autism Spectrum Disorder
Adults
Health
Co-occurring Conditions
Services
Perturbações do Desenvolvimento Infantil e Saúde Mental
topic Autism Spectrum Disorder
Adults
Health
Co-occurring Conditions
Services
Perturbações do Desenvolvimento Infantil e Saúde Mental
description The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.
publishDate 2021
dc.date.none.fl_str_mv 2021-05-28
2021-05-28T00:00:00Z
2022-07-06T14:32:43Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
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status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10400.18/8068
url http://hdl.handle.net/10400.18/8068
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Front Psychiatry. 2021 May 28;12:614102. doi: 10.3389/fpsyt.2021.614102. eCollection 2021.
1664-0640
10.3389/fpsyt.2021.614102
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Frontiers Media
publisher.none.fl_str_mv Frontiers Media
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
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collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
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