Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

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 exp...

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Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2021
Materias:
Original Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8510906/
https://www.ncbi.nlm.nih.gov/pubmed/33502713
http://dx.doi.org/10.1007/s10803-021-04873-5
Descripción
Sumario: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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10803-021-04873-5.

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