University of Oulu

Micai M, Ciaramella A, Salvitti T, Fulceri F, Fatta LM, Poustka L, Diehm R, Iskrov G, Stefanov R, Guillon Q, Rogé B, Staines A, Sweeney MR, Boilson AM, Leósdóttir T, Saemundsen E, Moilanen I, Ebeling H, Yliherva A, Gissler M, Parviainen T, Tani P, Kawa R, Vicente A, Rasga C, Budişteanu M, Dale I, Povey C, Flores N, Jenaro C, Monroy ML, Primo PG, Charman T, Cramer S, Warberg CK, Canal-Bedia R, Posada M, Scattoni ML and Schendel D (2021) Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project. Front. Psychiatry 12:614102.

Autistic adult health and professional perceptions of it : evidence from the ASDEU project

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Author: Micai, Martina1; Ciaramella, Antonio1; Salvitti, Tommaso1;
Organizations: 1Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, 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, Bulgaria
6Université Toulouse Jean Jaurès, CERPPS, Toulouse, France
7School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland
8The State Diagnostic and Counseling Center, Kópavogur, Iceland
9Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland
10Medical Faculty, PEDEGO Research Unit, Oulu University, Oulu, Finland
11Faculty of Social Sciences, University of Tampere, Logopedics, Tampere, Finland
12Finnish Institute for Health and Welfare, Helsinki, Finland
13Research Center for Child Psychiatry, University of Turku, Turku, Finland
14Division of Family Medicine, Department of Neurobiology, Care Sciences and Society, Stockholm, Karolinska Institute, Stockholm, Sweden
15Finnish Association for Autism and Asperger's Syndrome, Helsinki, Finland
16Department of Psychiatry, University of Helsinki, Helsinki, Finland
17Faculty of Psychology, University of Warsaw, Warsaw, Poland
18Instituto Nacional de Saúde Doutor Ricardo Jorge, Center for Biodiversity, Functional and Integrative Genomics, Lisbon, Portugal
19Victor Babeş’ National Institute for Research and Development in Pathology and Biomedical Sciences, Timisoara, Romania
20National Autistic Society, The Center for Autism, London, United Kingdom
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
24Kings College London, Institute of Psychiatry, Psychology and Neuroscience, London, United Kingdom
25Department of Public Health, Aarhus University, Aarhus, Denmark
26Lundbeck Foundation Initiative for Integrative Psychiatric Research, iPSYCH, Aarhus, Denmark
27Department of Economics and Business, National Center for Register-Based Research, Aarhus University, Aarhus, Denmark
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 1.9 MB)
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Language: English
Published: Frontiers Media, 2021
Publish Date: 2021-11-24


The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals’ education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.

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Series: Frontiers in psychiatry
ISSN: 1664-0640
ISSN-E: 1664-0640
ISSN-L: 1664-0640
Volume: 12
Article number: 614102
DOI: 10.3389/fpsyt.2021.614102
Type of Publication: A1 Journal article – refereed
Field of Science: 3124 Neurology and psychiatry
Funding: This study was funded by the European Parliament and managed by the European Union, DGSANTE [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: © 2021 Micai, Ciaramella, Salvitti, Fulceri, Fatta, Poustka, Diehm, Iskrov, Stefanov, Guillon, Rogé, Staines, Sweeney, Boilson, Leósdóttir, Saemundsen, Moilanen, Ebeling, Yliherva, Gissler, Parviainen, Tani, Kawa, Vicente, Rasga, Budişteanu, Dale, Povey, Flores, Jenaro, Monroy, Primo, Charman, Cramer, Warberg, Canal-Bedia, Posada, Scattoni and Schendel. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.