AUTHOR=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 , Scattoni Maria Luisa , Schendel Diana TITLE=Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project JOURNAL=Frontiers in Psychiatry VOLUME=12 YEAR=2021 URL=https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.614102 DOI=10.3389/fpsyt.2021.614102 ISSN=1664-0640 ABSTRACT=

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.