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Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project

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 desig...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8193054/
https://www.ncbi.nlm.nih.gov/pubmed/34122158
http://dx.doi.org/10.3389/fpsyt.2021.614102
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author 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_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_sort Micai, Martina
collection PubMed
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.
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spelling pubmed-81930542021-06-12 Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project 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 Front Psychiatry Psychiatry 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. Frontiers Media S.A. 2021-05-28 /pmc/articles/PMC8193054/ /pubmed/34122158 http://dx.doi.org/10.3389/fpsyt.2021.614102 Text en Copyright © 2021 Micai, Ciaramella, Salvitti, Fulceri, Fatta, Poustka, Diehm, Iskrov, Stefanov, Guillon, Rogé, Staines, Sweeney, Boilson, Leósdóttir, Saemundsen, Moilanen, Ebeling, Yliherva, Gissler, Parviainen, Tani, Kawa, Vicente, Rasga, Budişteanu, Dale, Povey, Flores, Jenaro, Monroy, Primo, Charman, Cramer, Warberg, Canal-Bedia, Posada, Scattoni and Schendel. 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
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
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
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_short 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
topic Psychiatry
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8193054/
https://www.ncbi.nlm.nih.gov/pubmed/34122158
http://dx.doi.org/10.3389/fpsyt.2021.614102
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