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Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

2021-01-27Journal article Open access
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dc.contributor.authorScattoni, Maria Luisa
dc.contributor.authorMicai, Martina
dc.contributor.authorCiaramella, Antonio
dc.contributor.authorSalvitti, Tommaso
dc.contributor.authorFulceri, Francesca
dc.contributor.authorFatta, Laura Maria
dc.contributor.authorPoustka, Luise
dc.contributor.authorDiehm, Robert
dc.contributor.authorIskrov, Georgi
dc.contributor.authorStefanov, Rumen
dc.contributor.authorGuillon, Quentin
dc.contributor.authorRogé, Bernadette
dc.contributor.authorStaines, Anthony
dc.contributor.authorSweeney, Mary Rose
dc.contributor.authorBoilson, Andrew Martin
dc.contributor.authorLeósdóttir, Thora
dc.contributor.authorSaemundsen, Evald
dc.contributor.authorMoilanen, Irma
dc.contributor.authorEbeling, Hanna
dc.contributor.authorYliherva, Anneli
dc.contributor.authorGissler, Mika
dc.contributor.authorParviainen, Tarja
dc.contributor.authorTani, Pekka
dc.contributor.authorKawa, Rafal
dc.contributor.authorVicente, Astrid
dc.contributor.authorRasga, Célia
dc.contributor.authorBudişteanu, Magdalena
dc.contributor.authorDale, Ian
dc.contributor.authorPovey, Carol
dc.contributor.authorFlores, Noelia
dc.contributor.authorJenaro, Cristina
dc.contributor.authorMonroy, Maria Luisa
dc.contributor.authorPrimo, Patricia García
dc.contributor.authorCharman, Tony
dc.contributor.authorCramer, Susanne
dc.contributor.authorWarberg, Christine Kloster
dc.contributor.authorCanal-Bedia, Ricardo
dc.contributor.authorPosada, Manuel
dc.contributor.authorSchendel, Diana
dc.date.accessioned2022-07-06T16:14:49Z
dc.date.available2022-07-06T16:14:49Z
dc.date.issued2021-01-27
dc.description.abstractResearch providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and postdiagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.pt_PT
dc.description.sponsorshipg This study was funded by the European Parliament and managed by the European Union, DGSANCO, [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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Autism Dev Disord. 2021 Nov;51(11):4129-4146. doi: 10.1007/s10803-021-04873-5. Epub 2021 Jan 27.pt_PT
dc.identifier.doi10.1007/s10803-021-04873-5pt_PT
dc.identifier.issn0162-3257
dc.identifier.urihttp://hdl.handle.net/10400.18/8076
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSpringerpt_PT
dc.relation.publisherversionhttps://link.springer.com/article/10.1007/s10803-021-04873-5pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectAutism Spectrum Disorderpt_PT
dc.subjectAdultspt_PT
dc.subjectDiagnosispt_PT
dc.subjectServicespt_PT
dc.subjectPerturbações do Desenvolvimento Infantil e Saúde Mentalpt_PT
dc.titleReal-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage4146pt_PT
oaire.citation.issue11pt_PT
oaire.citation.startPage4129pt_PT
oaire.citation.titleJournal of Autism and Developmental Disorderspt_PT
oaire.citation.volume51pt_PT
rcaap.embargofctAcesso de acordo com política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

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