Journal article
Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study
Journal of autism and developmental disorders, v 51(11), pp 4129-4146
01 Nov 2021
PMID: 33502713
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
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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Details
- Title
- Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study
- Creators
- Maria Luisa Scattoni - Istituto Superiore di SanitàMartina Micai - Istituto Superiore di SanitàAntonio Ciaramella - Istituto Superiore di SanitàTommaso Salvitti - Istituto Superiore di SanitàFrancesca Fulceri - Istituto Superiore di SanitàLaura Maria Fatta - Istituto Superiore di SanitàLuise Poustka - Universitätsmedizin GöttingenRobert Diehm - Medical University of ViennaGeorgi Iskrov - Medical University PlovdivRumen Stefanov - Medical University PlovdivQuentin Guillon - Université Toulouse - Jean JaurèsBernadette Rogé - Université Toulouse - Jean JaurèsAnthony Staines - Dublin City UniversityMary Rose Sweeney - Dublin City UniversityAndrew Martin Boilson - Dublin City UniversityThora Leósdóttir - The State Diagnostic and Counselling Centre, 200, Kópavogur, IcelandEvald Saemundsen - The State Diagnostic and Counselling Centre, 200, Kópavogur, IcelandIrma Moilanen - Oulu University HospitalHanna Ebeling - Oulu University HospitalAnneli Yliherva - Oulu University HospitalMika Gissler - Karolinska InstitutetTarja Parviainen - Finnish Association for Autism and Asperger's Syndrome, Helsinki, Uusimaa, FinlandPekka Tani - University of HelsinkiRafal Kawa - University of WarsawAstrid Vicente - National Institute of Health Dr. Ricardo JorgeCélia Rasga - National Institute of Health Dr. Ricardo JorgeMagdalena Budişteanu - Victor (Japan)Ian Dale - The National Autistic SocietyCarol Povey - The National Autistic SocietyNoelia Flores - Universidad de SalamancaCristina Jenaro - Universidad de SalamancaMaria Luisa Monroy - Universidad de SalamancaPatricia García Primo - Instituto de Salud Carlos IIITony Charman - King's College LondonSusanne Cramer - Aarhus UniversityChristine Kloster Warberg - Aarhus UniversityRicardo Canal-Bedia - Universidad de SalamancaManuel Posada - Instituto de Salud Carlos IIIDiana Schendel - Aarhus University
- Publication Details
- Journal of autism and developmental disorders, v 51(11), pp 4129-4146
- Publisher
- Springer Nature
- Grant note
- 1S49 / Italian Ministry of Health SANCO/2014/C2/035 / European Parliament and managed by the European Union, DGSANCO 2S57 / Italian Ministry of Health
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute
- Web of Science ID
- WOS:000612256700001
- Scopus ID
- 2-s2.0-85099839746
- Other Identifier
- 991021463445004721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Psychology, Developmental