Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study.
Scattoni Maria LuisaMartina MicaiAntonio CiaramellaTommaso SalvittiFrancesca FulceriLaura Maria FattaLuise PoustkaRobert DiehmGeorgi IskrovRumen StefanovQuentin GuillonBernadette RogéAnthony StainesMary Rose SweeneyAndrew Martin BoilsonThora LeósdóttirEvald SaemundsenIrma MoilanenHanna EbelingAnneli YlihervaMika GisslerTarja ParviainenPekka TaniRafal KawaAstrid VicenteCélia RasgaMagdalena BudişteanuIan DaleCarol PoveyNoelia FloresCristina JenaroMaria Luisa MonroyPatricia García PrimoTony CharmanSusanne CramerChristine Kloster WarbergRicardo Canal-BediaManuel PosadaDiana SchendelPublished in: Journal of autism and developmental disorders (2021)
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.