Frontiers in Psychiatry (May 2021)
Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project
- Martina Micai,
- Antonio Ciaramella,
- Tommaso Salvitti,
- Francesca Fulceri,
- Laura Maria Fatta,
- Luise Poustka,
- Robert Diehm,
- Georgi Iskrov,
- Georgi Iskrov,
- Rumen Stefanov,
- Rumen Stefanov,
- Quentin Guillon,
- Bernadette Rogé,
- Anthony Staines,
- Mary Rose Sweeney,
- Andrew Martin Boilson,
- Thora Leósdóttir,
- Evald Saemundsen,
- Irma Moilanen,
- Irma Moilanen,
- Hanna Ebeling,
- Hanna Ebeling,
- Anneli Yliherva,
- Anneli Yliherva,
- Mika Gissler,
- Mika Gissler,
- Mika Gissler,
- Tarja Parviainen,
- Pekka Tani,
- Rafal Kawa,
- Astrid Vicente,
- Célia Rasga,
- Magdalena Budişteanu,
- Ian Dale,
- Carol Povey,
- Noelia Flores,
- Cristina Jenaro,
- Maria Luisa Monroy,
- Patricia García Primo,
- Tony Charman,
- Susanne Cramer,
- Christine Kloster Warberg,
- Ricardo Canal-Bedia,
- Manuel Posada,
- Maria Luisa Scattoni,
- Diana Schendel,
- Diana Schendel,
- Diana Schendel
Affiliations
- Martina Micai
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Antonio Ciaramella
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Tommaso Salvitti
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Francesca Fulceri
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Laura Maria Fatta
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Luise Poustka
- Department of Child and Adolescent Psychiatry and Psychotherapy, University Medical Center Göttingen, Gottingen, Germany
- Robert Diehm
- Department of Child and Adolescent Psychiatry and Psychotherapy, Medical University of Vienna, Wien, Austria
- Georgi Iskrov
- Institute for Rare Diseases, Plovdiv, Bulgaria
- Georgi Iskrov
- Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria
- Rumen Stefanov
- Institute for Rare Diseases, Plovdiv, Bulgaria
- Rumen Stefanov
- Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria
- Quentin Guillon
- Université Toulouse Jean Jaurès, CERPPS, Toulouse, France
- Bernadette Rogé
- Université Toulouse Jean Jaurès, CERPPS, Toulouse, France
- Anthony Staines
- School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland
- Mary Rose Sweeney
- School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland
- Andrew Martin Boilson
- School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland
- Thora Leósdóttir
- The State Diagnostic and Counseling Center, Kópavogur, Iceland
- Evald Saemundsen
- The State Diagnostic and Counseling Center, Kópavogur, Iceland
- Irma Moilanen
- Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland
- Irma Moilanen
- 0Medical Faculty, PEDEGO Research Unit, Oulu University, Oulu, Finland
- Hanna Ebeling
- Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland
- Hanna Ebeling
- 0Medical Faculty, PEDEGO Research Unit, Oulu University, Oulu, Finland
- Anneli Yliherva
- Clinic of Child Psychiatry, University Hospital of Oulu, Oulu, Finland
- Anneli Yliherva
- 1Faculty of Social Sciences, University of Tampere, Logopedics, Tampere, Finland
- Mika Gissler
- 2Finnish Institute for Health and Welfare, Helsinki, Finland
- Mika Gissler
- 3Research Center for Child Psychiatry, University of Turku, Turku, Finland
- Mika Gissler
- 4Division of Family Medicine, Department of Neurobiology, Care Sciences and Society, Stockholm, Karolinska Institute, Stockholm, Sweden
- Tarja Parviainen
- 5Finnish Association for Autism and Asperger's Syndrome, Helsinki, Finland
- Pekka Tani
- 6Department of Psychiatry, University of Helsinki, Helsinki, Finland
- Rafal Kawa
- 7Faculty of Psychology, University of Warsaw, Warsaw, Poland
- Astrid Vicente
- 8Instituto Nacional de Saúde Doutor Ricardo Jorge, Center for Biodiversity, Functional and Integrative Genomics, Lisbon, Portugal
- Célia Rasga
- 8Instituto Nacional de Saúde Doutor Ricardo Jorge, Center for Biodiversity, Functional and Integrative Genomics, Lisbon, Portugal
- Magdalena Budişteanu
- 9‘Victor Babeş’ National Institute for Research and Development in Pathology and Biomedical Sciences, Timisoara, Romania
- Ian Dale
- 0National Autistic Society, The Center for Autism, London, United Kingdom
- Carol Povey
- 0National Autistic Society, The Center for Autism, London, United Kingdom
- Noelia Flores
- 1Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO - Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
- Cristina Jenaro
- 1Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO - Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
- Maria Luisa Monroy
- 2Departamento de Psicología Evolutiva y de la Educación, INICO - Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
- Patricia García Primo
- 3Instituto de Salud Carlos III, Institute of Rare Diseases Research Madrid, Madrid, Spain
- Tony Charman
- 4Kings College London, Institute of Psychiatry, Psychology and Neuroscience, London, United Kingdom
- Susanne Cramer
- 5Department of Public Health, Aarhus University, Aarhus, Denmark
- Christine Kloster Warberg
- 5Department of Public Health, Aarhus University, Aarhus, Denmark
- Ricardo Canal-Bedia
- 1Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, INICO - Instituto Universitario de Integración en la Comunidad University of Salamanca, Salamanca, Spain
- Manuel Posada
- 3Instituto de Salud Carlos III, Institute of Rare Diseases Research Madrid, Madrid, Spain
- Maria Luisa Scattoni
- Istituto Superiore di Sanità, Research Coordination and Support Service, Rome, Italy
- Diana Schendel
- 5Department of Public Health, Aarhus University, Aarhus, Denmark
- Diana Schendel
- 6Lundbeck Foundation Initiative for Integrative Psychiatric Research, iPSYCH, Aarhus, Denmark
- Diana Schendel
- 7Department of Economics and Business, National Center for Register-Based Research, Aarhus University, Aarhus, Denmark
- DOI
- https://doi.org/10.3389/fpsyt.2021.614102
- Journal volume & issue
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Vol. 12
Abstract
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.
Keywords
