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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.
Scattoni, Maria Luisa; Micai, Martina; Ciaramella, Antonio; Salvitti, Tommaso; Fulceri, Francesca; Fatta, Laura Maria; Poustka, Luise; Diehm, Robert; Iskrov, Georgi; Stefanov, Rumen; Guillon, Quentin; Rogé, Bernadette; Staines, Anthony; Sweeney, Mary Rose; Boilson, Andrew Martin; Leósdóttir, Thora; Saemundsen, Evald; Moilanen, Irma; Ebeling, Hanna; Yliherva, Anneli; Gissler, Mika; Parviainen, Tarja; Tani, Pekka; Kawa, Rafal; Vicente, Astrid; Rasga, Célia; Budisteanu, Magdalena; Dale, Ian; Povey, Carol; Flores, Noelia; Jenaro, Cristina; Monroy, Maria Luisa; Primo, Patricia García; Charman, Tony; Cramer, Susanne; Warberg, Christine Kloster; Canal-Bedia, Ricardo; Posada, Manuel; Schendel, Diana.
Afiliación
  • Scattoni ML; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy. marialuisa.scattoni@iss.it.
  • Micai M; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.
  • Ciaramella A; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.
  • Salvitti T; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.
  • Fulceri F; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.
  • Fatta LM; Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.
  • Poustka L; Department of Child and Adolescent Psychiatry and Psychotherapy, University Medical Center Göttingen, Gottingen, Germany.
  • Diehm R; Department of Child and Adolescent Psychiatry and Psychotherapy, Medical University of Vienna, Wien, Austria.
  • Iskrov G; Institute for Rare Diseases, Plovdiv, Bulgaria.
  • Stefanov R; Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv Town, Bulgaria.
  • Guillon Q; Institute for Rare Diseases, Plovdiv, Bulgaria.
  • Rogé B; Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv Town, Bulgaria.
  • Staines A; Université Toulouse Jean Jaurès, CERPPS, Toulouse, Occitanie, France.
  • Sweeney MR; Université Toulouse Jean Jaurès, CERPPS, Toulouse, Occitanie, France.
  • Boilson AM; School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.
  • Leósdóttir T; School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.
  • Saemundsen E; School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.
  • Moilanen I; The State Diagnostic and Counselling Centre, 200, Kópavogur, Iceland.
  • Ebeling H; The State Diagnostic and Counselling Centre, 200, Kópavogur, Iceland.
  • Yliherva A; Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
  • Gissler M; Medical Faculty, Oulu University Hospital, Oulu, Finland.
  • Parviainen T; Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
  • Tani P; Medical Faculty, Oulu University Hospital, Oulu, Finland.
  • Kawa R; Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
  • Vicente A; University of Oulu, Logopedic Child Language Research Center, Oulu, Finland.
  • Rasga C; Finnish Institute for Health and Welfare, Helsinki, Uusimaa, Finland.
  • Budisteanu M; University of Turku, Research Centre for Child Psychiatry, Turku, Finland.
  • Dale I; Division of Family Medicine, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
  • Povey C; Finnish Association for Autism and Asperger's Syndrome, Helsinki, Uusimaa, Finland.
  • Flores N; Department of Psychiatry, University of Helsinki, Helsinki, Finland.
  • Jenaro C; Faculty of Psychology, University of Warsaw, Warsaw, Poland.
  • Monroy ML; Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.
  • Primo PG; Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.
  • Charman T; Victor Babes" National Institute for Research and Development in Pathology and Biomedical Sciences, Timisoara, Romania.
  • Cramer S; National Autistic Society, The Centre for Autism, London, UK.
  • Warberg CK; National Autistic Society, The Centre for Autism, London, UK.
  • Canal-Bedia R; Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.
  • Posada M; Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.
  • Schendel D; Departamento de Psicología Evolutiva y de la Educación, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.
J Autism Dev Disord ; 51(11): 4129-4146, 2021 Nov.
Article en En | MEDLINE | ID: mdl-33502713
ABSTRACT
Research 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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trastorno Autístico / Trastorno del Espectro Autista Tipo de estudio: Diagnostic_studies / Guideline / Prognostic_studies / Qualitative_research Límite: Adult / Humans Idioma: En Revista: J Autism Dev Disord Año: 2021 Tipo del documento: Article País de afiliación: Italia
Texto completo
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Imprimir
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trastorno Autístico / Trastorno del Espectro Autista Tipo de estudio: Diagnostic_studies / Guideline / Prognostic_studies / Qualitative_research Límite: Adult / Humans Idioma: En Revista: J Autism Dev Disord Año: 2021 Tipo del documento: Article País de afiliación: Italia