University of Oulu

Scattoni, M.L., Micai, M., Ciaramella, A. et al. Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study. J Autism Dev Disord 51, 4129–4146 (2021).

Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines : results from the ASDEU study

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Author: Scattoni, Maria Luisa1; Micai, Martina1; Ciaramella, Antonio1;
Organizations: 1Istituto Superiore Di Sanità, Research Coordination and Support Service, Regina Elena 299, 00161, Roma, Italy
2Department of Child and Adolescent Psychiatry and Psychotherapy, University Medical Center Göttingen, Gottingen, Germany
3Department of Child and Adolescent Psychiatry and Psychotherapy, Medical University of Vienna, Wien, Austria
4Institute for Rare Diseases, Plovdiv, Bulgaria
5Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv Town, Bulgaria
6Université Toulouse Jean Jaurès, CERPPS, Toulouse, Occitanie, France
7School of Nursing, Psychotherapy & Community Health, Dublin City University, Dublin, Republic of Ireland
8The State Diagnostic and Counselling Centre, 200, Kópavogur, Iceland
9Clinic of Child Psychiatry, University and University Hospital of Oulu, Oulu, Finland
10Medical Faculty, Oulu University Hospital, Oulu, Finland
11University of Oulu, Logopedic Child Language Research Center, Oulu, Finland
12Finnish Institute for Health and Welfare, Helsinki, Uusimaa, Finland
13University of Turku, Research Centre for Child Psychiatry, Turku, Finland
14Division of Family Medicine, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden
15Finnish Association for Autism and Asperger’s Syndrome, Helsinki, Uusimaa, Finland
16Department of Psychiatry, University of Helsinki, Helsinki, Finland
17Faculty of Psychology, University of Warsaw, Warsaw, Poland
18Center for Biodiversity, Functional and Integrative Genomics, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal
19Victor Babeş” National Institute for Research and Development in Pathology and Biomedical Sciences, Timisoara, Romania
20National Autistic Society, The Centre for Autism, London, UK
21Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO—Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
22Departamento de Psicología Evolutiva y de la Educación, INICO—Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
23Instituto de Salud Carlos III, Institute of Rare Diseases Research Madrid, Madrid, Spain
24Institute of Psychiatry, Kings College London, London, UK
25Department of Public Health, Aarhus University, Aarhus, Denmark
26Lundbeck Foundation Initiative for Integrative Psychiatric Research, iPSYCH, Aarhus, Denmark
27Department of Economics and Business, Aarhus University, National Centre for Register-Based Research, Aarhus, Denmark
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.9 MB)
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Language: English
Published: Springer Nature, 2021
Publish Date: 2022-01-17


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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Series: Journal of autism and developmental disorders
ISSN: 0162-3257
ISSN-E: 1573-3432
ISSN-L: 0162-3257
Volume: 51
Issue: 11
Pages: 4129 - 4146
DOI: 10.1007/s10803-021-04873-5
Type of Publication: A1 Journal article – refereed
Field of Science: 3124 Neurology and psychiatry
3112 Neurosciences
Funding: This study was funded by the European Parliament and managed by the European Union, DGSANCO, [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects ‘Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico’ (Fasc. 1S49) and ‘I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016’ (Fasc. 2S57) granted the contribution of the Italian data.
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