학술논문
Autistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Survey.
Document Type
Academic Journal
Author
Micai M; Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy.; Fulceri F; Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy.; Salvitti T; Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy.; Romano G; Directorate General of Health Prevention, Ministry of Health, Rome, Italy.; Poustka L; University Medical Center Göttingen, Department of Child and Adolescent Psychiatry and Psychotherapy, Göttingen, Germany.; Diehm R; Department of Child and Adolescent Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria.; Iskrov G; Institute for Rare Diseases, Plovdiv, Bulgaria.; Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria.; Stefanov R; Institute for Rare Diseases, Plovdiv, Bulgaria.; Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria.; Guillon Q; CERPPS, Université Toulouse Jean Jaurès, Toulouse, France.; Rogé B; CERPPS, Université Toulouse Jean Jaurès, Toulouse, France.; Staines A; School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland.; Sweeney MR; School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland.; Boilson AM; School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland.; Leósdóttir T; The State Diagnostic and Counselling Centre, Kópavogur, Iceland.; Saemundsen E; The State Diagnostic and Counselling Centre, Kópavogur, Iceland.; Moilanen I; Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland.; Oulu University Hospital, Medical Faculty, Oulu, Finland.; Ebeling H; Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland.; Oulu University Hospital, Medical Faculty, Oulu, Finland.; Yliherva A; Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland.; Logopedic Child Language Research Center, University of Oulu, Oulu, Finland.; Gissler M; Department of Knowledge Brokers, Finnish Institute for Health and Welfare, Helsinki, Finland.; Research Centre for Child Psychiatry, University of Turku, Turku, Finland.; Department of Molecular Medicine and Surgery and Region Stockholm, Academic Primary Health Care Centre, Karolinska Institute, Stockholm, Sweden.; Parviainen T; Finnish Association for Autism and Asperger's Syndrome, Helsinki, Finland.; Tani P; Department of Psychiatry, University of Helsinki, Helsinki, Finland.; Kawa R; Faculty of Psychology, University of Warsaw, Warsaw, Poland.; Pisula E; Faculty of Psychology, University of Warsaw, Warsaw, Poland.; Vicente A; Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.; Rasga C; Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.; Budişteanu M; 'Victor Babeş' National Institute for Research and Development in Pathology and Biomedical Sciences, Bucharest, Romania.; Dale I; National Autistic Society, The Centre for Autism, London, United Kingdom.; Povey C; National Autistic Society, The Centre for Autism, London, United Kingdom.; Flores N; Departamento de Personalidad, Evaluación y Tratamiento Psicológicos Salamanca, Instituto Universitario de Integración en la Comunidad, University of Salamanca, Salamanca, Spain.; Jenaro C; Departamento de Personalidad, Evaluación y Tratamiento Psicológicos Salamanca, Instituto Universitario de Integración en la Comunidad, University of Salamanca, Salamanca, Spain.; Monroy ML; Departamento de Psicología Evolutiva y de la Educación, Instituto Universitario de Integración en la Comunidad, University of Salamanca, Salamanca, Spain.; Primo PG; Instituto de Salud Carlos III, Institute of Rare Diseases Research, Madrid, Spain.; Charman T; King's College London, Institute of Psychiatry, London, United Kingdom.; Cramer S; Department of Public Health, Aarhus University, Aarhus, Denmark.; Warberg CK; Department of Public Health, Aarhus University, Aarhus, Denmark.; Canal-Bedia R; Departamento de Personalidad, Evaluación y Tratamiento Psicológicos Salamanca, Instituto Universitario de Integración en la Comunidad, University of Salamanca, Salamanca, Spain.; Posada M; Instituto de Salud Carlos III, Institute of Rare Diseases Research, Madrid, Spain.; Schendel D; Department of Public Health, Aarhus University, Aarhus, Denmark.; Lundbeck Foundation Initiative for Integrative Psychiatric Research, Aarhus, Denmark.; Department of Economics and Business, National Centre for Register-Based Research, Aarhus University, Aarhus, Denmark.; Scattoni ML; Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy.
Source
Publisher: Frontiers Research Foundation Country of Publication: Switzerland NLM ID: 101545006 Publication Model: eCollection Cited Medium: Print ISSN: 1664-0640 (Print) Linking ISSN: 16640640 NLM ISO Abbreviation: Front Psychiatry Subsets: PubMed not MEDLINE
Subject
Language
English
ISSN
1664-0640
Abstract
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.
Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
(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.)
Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
(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.)