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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 |
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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) |
| Persistent link: | http://urn.fi/urn:nbn:fi-fe202201178814 |
| Language: | English |
| Published: |
Springer Nature,
2021
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| Publish Date: | 2022-01-17 |
| Description: |
AbstractResearch 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. see all
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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 |
| OADOI: | https://oadoi.org/10.1007/s10803-021-04873-5 |
| Type of Publication: |
A1 Journal article – refereed |
| Field of Science: |
3124 Neurology and psychiatry 3112 Neurosciences |
| Subjects: | |
| 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. |
| Copyright information: |
© The Author(s) 2021. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. |
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https://creativecommons.org/licenses/by/4.0/ |