Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study.


Journal

Journal of autism and developmental disorders
ISSN: 1573-3432
Titre abrégé: J Autism Dev Disord
Pays: United States
ID NLM: 7904301

Informations de publication

Date de publication:
Nov 2021
Historique:
accepted: 04 01 2021
pubmed: 28 1 2021
medline: 15 10 2021
entrez: 27 1 2021
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 33502713
doi: 10.1007/s10803-021-04873-5
pii: 10.1007/s10803-021-04873-5
pmc: PMC8510906
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

4129-4146

Subventions

Organisme : European Parliament and managed by the European Union, DGSANCO
ID : SANCO/2014/C2/035
Organisme : Italian Ministry of Health
ID : 1S49
Organisme : Italian Ministry of Health
ID : 2S57

Informations de copyright

© 2021. The Author(s).

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Auteurs

Maria Luisa Scattoni (ML)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy. marialuisa.scattoni@iss.it.

Martina Micai (M)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.

Antonio Ciaramella (A)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.

Tommaso Salvitti (T)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.

Francesca Fulceri (F)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.

Laura Maria Fatta (LM)

Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy.

Luise Poustka (L)

Department of Child and Adolescent Psychiatry and Psychotherapy, University Medical Center Göttingen, Gottingen, Germany.

Robert Diehm (R)

Department of Child and Adolescent Psychiatry and Psychotherapy, Medical University of Vienna, Wien, Austria.

Georgi Iskrov (G)

Institute for Rare Diseases, Plovdiv, Bulgaria.
Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv Town, Bulgaria.

Rumen Stefanov (R)

Institute for Rare Diseases, Plovdiv, Bulgaria.
Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv Town, Bulgaria.

Quentin Guillon (Q)

Université Toulouse Jean Jaurès, CERPPS, Toulouse, Occitanie, France.

Bernadette Rogé (B)

Université Toulouse Jean Jaurès, CERPPS, Toulouse, Occitanie, France.

Anthony Staines (A)

School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.

Mary Rose Sweeney (MR)

School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.

Andrew Martin Boilson (AM)

School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland.

Thora Leósdóttir (T)

The State Diagnostic and Counselling Centre, 200, Kópavogur, Iceland.

Evald Saemundsen (E)

The State Diagnostic and Counselling Centre, 200, Kópavogur, Iceland.

Irma Moilanen (I)

Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
Medical Faculty, Oulu University Hospital, Oulu, Finland.

Hanna Ebeling (H)

Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
Medical Faculty, Oulu University Hospital, Oulu, Finland.

Anneli Yliherva (A)

Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland.
University of Oulu, Logopedic Child Language Research Center, Oulu, Finland.

Mika Gissler (M)

Finnish Institute for Health and Welfare, Helsinki, Uusimaa, Finland.
University of Turku, Research Centre for Child Psychiatry, Turku, Finland.
Division of Family Medicine, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.

Tarja Parviainen (T)

Finnish Association for Autism and Asperger's Syndrome, Helsinki, Uusimaa, Finland.

Pekka Tani (P)

Department of Psychiatry, University of Helsinki, Helsinki, Finland.

Rafal Kawa (R)

Faculty of Psychology, University of Warsaw, Warsaw, Poland.

Astrid Vicente (A)

Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.

Célia Rasga (C)

Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal.

Magdalena Budişteanu (M)

Victor Babeş" National Institute for Research and Development in Pathology and Biomedical Sciences, Timisoara, Romania.

Ian Dale (I)

National Autistic Society, The Centre for Autism, London, UK.

Carol Povey (C)

National Autistic Society, The Centre for Autism, London, UK.

Noelia Flores (N)

Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.

Cristina Jenaro (C)

Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.

Maria Luisa Monroy (ML)

Departamento de Psicología Evolutiva y de la Educación, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.

Patricia García Primo (PG)

Instituto de Salud Carlos III, Institute of Rare Diseases Research Madrid, Madrid, Spain.

Tony Charman (T)

Institute of Psychiatry, Kings College London, London, UK.

Susanne Cramer (S)

Department of Public Health, Aarhus University, Aarhus, Denmark.

Christine Kloster Warberg (CK)

Department of Public Health, Aarhus University, Aarhus, Denmark.

Ricardo Canal-Bedia (R)

Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO-Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain.

Manuel Posada (M)

Instituto de Salud Carlos III, Institute of Rare Diseases Research Madrid, Madrid, Spain.

Diana Schendel (D)

Department of Public Health, Aarhus University, Aarhus, Denmark.
Lundbeck Foundation Initiative for Integrative Psychiatric Research, iPSYCH, Aarhus, Denmark.
Department of Economics and Business, Aarhus University, National Centre for Register-Based Research, Aarhus, Denmark.

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