Autistic Adult Health and Professional Perceptions of It: evidence from the ASDEU Project
Autor(a) principal: | |
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Data de Publicação: | 2021 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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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 |
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info:eu-repo/semantics/article |
format |
article |
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 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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Frontiers Media |
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Frontiers Media |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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