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. ; Peer reviewed
In: Bejarano-Martín , Á , Canal-Bedia , R , Magán-Maganto , M , Fernández-Álvarez , C , Cilleros-Martín , M V , Sánchez-Gómez , M C , García-Primo , P , Rose-Sweeney , M , Boilson , A , Linertová , R , Roeyers , H , Van der Paelt , S , Schendel , D , Warberg , C , Cramer , S , Narzisi , A , Muratori , F , Scattoni , M L , Moilanen , I , Yliherva , A , Saemundsen , E , Loa Jónsdóttir , S , Efrim-Budisteanu , M , Arghir , A , Papuc , S M , Vicente , A , Rasga , C , Rogé , B , Guillon , Q , Baduel , S , Kafka , J X , Poustka , L , Kothgassner , O D , Kawa , R , Pisula , E , Sellers , T & Posada de la Paz , M 2020 , ' Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU) : Family and Professional Perspectives ' , Journal of Autism and Developmental Disorders , vol. 50 , no. 9 , pp. 3380-3394 . https://doi.org/10.1007/s10803-019-04253-0
Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents' opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child's age, delays in accessing services, and active stakeholders' participation when looking to improve services.
