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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
Budisteanu, 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
Source :
Journal of Autism and Developmental Disorders. Nov 2021 51(11):4129-4146.
Publication Year :
2021

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.

Details

Language :
English
ISSN :
0162-3257
Volume :
51
Issue :
11
Database :
ERIC
Journal :
Journal of Autism and Developmental Disorders
Publication Type :
Academic Journal
Accession number :
EJ1312857
Document Type :
Journal Articles<br />Reports - Research
Full Text :
https://doi.org/10.1007/s10803-021-04873-5