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

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  • Martina Micai, Ist Super Sanita, Istituto Superiore di Sanita, Core Facil, FaBioCell
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  • Francesca Fulceri, Ist Super Sanita, Istituto Superiore di Sanita, Core Facil, FaBioCell
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  • Tommaso Salvitti, Ist Super Sanita, Istituto Superiore di Sanita, Core Facil, FaBioCell
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  • Giovanna Romano, Directorate General of Health Prevention
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  • Luise Poustka, Institute of Human Genetics, University Medical Center Göttingen, Göttingen, Germany.
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  • Robert Diehm, Medical University of Vienna
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  • Georgi Iskrov, Institute for Rare Diseases
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  • Rumen Stefanov, Institute for Rare Diseases
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  • Quentin Guillon, CERPPS, Université Toulouse Jean-Jaurès, Toulouse, France.
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  • Bernadette Rogé, CERPPS, Université Toulouse Jean-Jaurès, Toulouse, France.
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  • Anthony Staines, School of Physical Sciences, Dublin City University, Dublin 9
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  • Mary Rose Sweeney, School of Physical Sciences, Dublin City University, Dublin 9
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  • Andrew Martin Boilson, School of Physical Sciences, Dublin City University, Dublin 9
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  • Thora Leósdóttir, The State Diagnostic and Counselling Centre
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  • Evald Saemundsen, The State Diagnostic and Counselling Centre
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  • Irma Moilanen, University of Oulu
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  • Hanna Ebeling, University of Oulu
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  • Anneli Yliherva, University of Oulu
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  • Mika Gissler, Finnish Institute for Health and Welfare
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  • Tarja Parviainen, Finnish Association for Autism and Asperger's Syndrome
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  • Pekka Tani, University of Helsinki
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  • Rafal Kawa, Univ Warsaw Observ, Warsaw University Observatory
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  • Eva Pisula, Univ Warsaw Observ, Warsaw University Observatory
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  • Astrid Vicente, Center for Marine Biodiversity
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  • Célia Rasga, Center for Marine Biodiversity
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  • Magdalena Budişteanu, "Victor Babeş" National Institute for Research and Development in Pathology and Biomedical Sciences
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  • Ian Dale, National Autistic Society
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  • Carol Povey, National Autistic Society
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  • Noelia Flores, University Hospital of Salamanca
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  • Cristina Jenaro, University of Salamanca
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  • Maria Luisa Monroy, University of Salamanca
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  • Patricia García Primo, National School of Public Health Institute of Health Carlos III
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  • Tony Charman, Department of Psychosis Studies, King's College London, King's Health Partners, Institute of Psychiatry, London, UK.
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  • Susanne Cramer
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  • Christine Kloster Warberg
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  • Ricardo Canal-Bedia, University of Salamanca
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  • Manuel Posada, National School of Public Health Institute of Health Carlos III
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  • Diana Schendel
  • Maria Luisa Scattoni, Ist Super Sanita, Istituto Superiore di Sanita, Core Facil, FaBioCell

There 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.

OriginalsprogEngelsk
TidsskriftFrontiers in Psychiatry
Vol/bind13
Sider (fra-til)919234
ISSN1664-0640
DOI
StatusUdgivet - 2022

Bibliografisk note

Copyright © 2022 Micai, Fulceri, Salvitti, Romano, Poustka, Diehm, Iskrov, Stefanov, Guillon, Rogé, Staines, Sweeney, Boilson, Leósdóttir, Saemundsen, Moilanen, Ebeling, Yliherva, Gissler, Parviainen, Tani, Kawa, Pisula, Vicente, Rasga, Budişteanu, Dale, Povey, Flores, Jenaro, Monroy, Primo, Charman, Cramer, Warberg, Canal-Bedia, Posada, Schendel and Scattoni.

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