A1 Refereed original research article in a scientific journal
Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study
Authors: Scattoni Maria Luisa , Micai Martina, Ciaramella Antonio, Salvitti Tommaso, Fulceri Francesca, Fatta Laura Maria, Poustka Luise, Diehm Robert, Iskrov Georgi, Stefanov Rumen, Guillon Quentin, Rogé Bernadette, Staines Anthony, Sweeney Mary Rose, Boilson Andrew Martin, Leósdóttir Thora, Saemundsen Evald, Moilanen Irma, Ebeling Hanna, Yliherva Anneli, Gissler Mika, Parviainen Tarja, Tani Pekka, Kawa Rafal, Vicente Astrid, Rasga Célia, Budişteanu Magdalena, Dale Ian, Povey Carol, Flores Noelia, Jenaro Cristina, Monroy Maria Luisa, Primo Patricia García, Charman Tony, Cramer Susanne, Warberg Christine Kloster, Canal-Bedia Ricardo, Posada Manuel, Schendel Diana
Publisher: SPRINGER/PLENUM PUBLISHERS
Publication year: 2021
Journal: Journal of Autism and Developmental Disorders
Journal name in source: JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
Journal acronym: J AUTISM DEV DISORD
Volume: 51
First page : 4129
Last page: 4146
Number of pages: 18
ISSN: 0162-3257
eISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-04873-5
Self-archived copy’s web address: https://research.utu.fi/converis/portal/detail/Publication/53062681
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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