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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

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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.authorGarcia-Primo, Patricia
dc.contributor.authorCharman, Tony
dc.contributor.authorCramer, Susanne
dc.contributor.authorWarberg, Christine Kloster
dc.contributor.authorCanal-Bedia, Ricardo
dc.contributor.authorPosada De la Paz, Manuel
dc.contributor.authorSchendel, Diana
dc.contributor.funderUnión Europea
dc.date.accessioned2021-02-26T17:41:50Z
dc.date.available2021-02-26T17:41:50Z
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 post-diagnostic 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.es_ES
dc.description.peerreviewedSíes_ES
dc.description.sponsorshipThis 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.es_ES
dc.identifier.citationJ Autism Dev Disord. 2021 Nov;51(11):4129-4146.es_ES
dc.identifier.doi10.1007/s10803-021-04873-5es_ES
dc.identifier.e-issn1573-3432es_ES
dc.identifier.journalJournal of autism and developmental disorderses_ES
dc.identifier.pubmedID33502713es_ES
dc.identifier.urihttp://hdl.handle.net/20.500.12105/12024
dc.language.isoenges_ES
dc.publisherSpringer
dc.relation.projectIDinfo:eu-repo/grantAgreement/EC/SANCO/2014/C2/035es_ES
dc.relation.publisherversionhttps://doi.org/10.1007/s10803-021-04873-5es_ES
dc.repisalud.centroISCIII::Instituto de Investigación de Enfermedades Raras (IIER)es_ES
dc.repisalud.institucionISCIIIes_ES
dc.rights.accessRightsopen accesses_ES
dc.rights.licenseAtribución 4.0 Internacional*
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/*
dc.subjectAutism spectrum disorderes_ES
dc.subjectAdultses_ES
dc.subjectDiagnosises_ES
dc.subjectServiceses_ES
dc.titleReal-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Studyes_ES
dc.typeresearch articlees_ES
dc.type.hasVersionVoRes_ES
dspace.entity.typePublication
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