Repository logo
 
Publication

Autistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Survey

2022-06-10Journal article Open access
Simple item page
dc.contributor.authorMicai, Martina
dc.contributor.authorFulceri, Francesca
dc.contributor.authorSalvitti, Tommaso
dc.contributor.authorRomano, Giovanna
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.authorPisula, Eva
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.contributor.authorScattoni, Maria Luisa
dc.date.accessioned2023-03-20T15:41:59Z
dc.date.available2023-03-20T15:41:59Z
dc.date.issued2022-06-10
dc.descriptionFree PMC article: https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/35757227/pt_PT
dc.description.abstractThere is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: "help in own home" (adults, carers of high independent adults, professionals), "fulltime residential facility" (carers of low independent adults); employment services: "job mentors" (adults, carers of high independent adults, professionals), "Sheltered employment" (carers of low independent adults); education services: "support in regular education setting" (all groups); financial services: financial support in lieu of employment ("Supplementary income for persons unable to have full employment" for adults, "full pension" for carers of low independent adults) or to supplement employment earnings for carers of high independent adults and professionals; social services: "behavior training" (adults) and "life skills training" (carers and professionals). Waiting times for specific services were generally < 1 month or 1-3 months, except for residential services which could be up to 6 months; most professionals were uninformed of waiting times (>50% responded "don't know"). Five of seven residential services features recommended for autistic adults were experienced by <50% of adults. The knowledge of good local services models that work well for autistic adults was generally low across all services areas. The variation in services experiences and perceptions reported by autistic adults, carers, or professionals underscore the need to query all groups for a complete picture of community services availability and needs. The results showed areas for potential improvement in autistic adult services delivery in the EU to achieve recommended standards.pt_PT
dc.description.sponsorshipThe present study has been funded by the European Parliament and managed by the European Union, DG SANTE (Ref. SANCO/2014/C2/035), the Italian Ministry of Health projects “Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico” (Fasc. 1S49), and the collaboration agreement with the Ministry of Health – General Directorate of Health Prevention and General Directorate of Health Programming, registered by the Court of Auditors on 3.6.2019 with note no. 1-2105 for the implementation of the project “Definizione di criteri e modalità di utilizzo del fondo per la cura di soggetti con disturbo dello spettro autistico” (Fasc. 5S13).pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationFront Psychiatry. 2022 Jun 10;13:919234. doi: 10.3389/fpsyt.2022.919234. eCollection 2022.pt_PT
dc.identifier.doi10.3389/fpsyt.2022.919234pt_PT
dc.identifier.issn664-0640
dc.identifier.urihttp://hdl.handle.net/10400.18/8579
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherFrontiers Mediapt_PT
dc.relation.publisherversionhttps://www.frontiersin.org/articles/10.3389/fpsyt.2022.919234/fullpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectAutismpt_PT
dc.subjectAutism Spectrum Disorderpt_PT
dc.subjectAdultspt_PT
dc.subjectEducation Servicept_PT
dc.subjectEmployment Servicept_PT
dc.subjectFinancial Servicept_PT
dc.subjectResidential Servicept_PT
dc.subjectSocial Servicept_PT
dc.subjectPerturbações do Desenvolvimento Infantil e Saúde Mentalpt_PT
dc.titleAutistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Surveypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.startPage919234pt_PT
oaire.citation.titleFrontiers in Psychiatrypt_PT
oaire.citation.volume13pt_PT
rcaap.embargofctAcesso de acordo com política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

Files

Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
fpsyt-13-919234.pdf
Size:
3.63 MB
Format:
Adobe Portable Document Format
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
1.71 KB
Format:
Item-specific license agreed upon to submission
Description:
Download

Collections

DPSPDNT - Artigos em revistas internacionais