Services and Care for Adults with Autism Spectrum Disorder in the European Union: A Multi-Site Assessment By the Asdeu Consortium

Thursday, May 11, 2017: 5:30 PM-7:00 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
D. E. Schendel1, C. Kloster Warberg2, S. Cramer2, L. Poustka3, R. Diehm4, G. Iskrov5, R. Stefanov6, L. Bouvet7, B. Roge8, A. Staines9, M. R. Sweeney10, A. M. Boilson11, T. Leósdóttir12, E. Saemundsen13, F. Muratori14, I. K. Moilanen15, M. Gissler16, T. Parviainen17, P. Tani18, R. Kawa19, A. M. Vicente20, C. Rasga21, M. Efrim-Budisteanu22, I. Dale23, C. Povey24, N. Flores25, C. Jenaro25, M. L. Monroy25, P. Garcia Primo26 and M. Posada27, (1)Aarhus University, Aarhus, DENMARK, (2)Aarhus University, Aarhus, Denmark, (3)Clinic for Child and Adolescent Psychiatry, Medical University Vienna, Vienna, Austria, (4)Clinic for Child and Adolescent Psychiatry, Medical University of Vienna, Wien, Austria, (5)Bulgarian Association for Promotion of Education and Science (BAPES), Plovdiv, Bulgaria, (6)Institute for rare diseases, Bulgarian Association for Promotion of Education and Science (BAPES), Plovdiv, Bulgaria, (7)University Toulouse 2, Toulouse, France, (8)Université de Toulouse 2 Jean Jaurès, Toulouse, FRANCE, (9)Dublin City University, Dublin, IRELAND, (10)School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland, (11)Dublin City University, Dublin 9, IRELAND, (12)(State Diagnostic and Counselling Centre, Kópavogur, Iceland, (13)State Diagnostic and Counseling Center, Kopavogur, ICELAND, (14)Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy, (15)University of Oulu, Oulu, FINLAND, (16)University and University Hospital of Oulu, Oulu, Finland, (17)The Finnish Association for Autism and Asperger’s Syndrome, Helsinki, Finland, (18)University of Helsinki, Helsinki, Finland, (19)University of Warsaw, Warsaw, Poland, (20)Instituto Nacional Saude Doutor Ricardo Jorge, Lisbon, PORTUGAL, (21)Instituto Nacional de Saúde Doutor Ricardo Jorge (INSA), Lisbon, Portugal, (22)"Victor Babes” National Institute of Pathology, Bucharest, Romania, (23)Centre for Autism, The National Autistic Society, London, United Kingdom, (24)The National Autistic Society, London, UNITED KINGDOM, (25)University of Salamanca, Salamanca, Spain, (26)Carlos III National Health Institute, Madrid, SPAIN, (27)Carlos III Health Institute, Madrid, SPAIN
Background: In the wake of dramatic increases in autism spectrum disorder (ASD) diagnosed in children we now see an unprecedented increase in persons with ASD entering adolescence and young adulthood. In comparison with research in children, however, the research base focusing on ASD in adulthood is underdeveloped. There is relatively little research knowledge regarding autistic adult services and care or the readiness of communities to provide adult services for persons with ASD.

Objectives: Create a framework for improving services and care for autistic adults in the European Union (EU) through improved understanding of current care practices, gaps in care provision, opportunities for care improvement and local models of adult care as part of the Autism Spectrum Disorder in the European Union (ASDEU) consortium comprised of 20 partners in 14 EU states.

Methods: The 5 adult services focus areas are approaches to services and treatment, management of comorbidity, access to diagnosis and post-diagnostic support, transitions during adult life, and autistic elder care. Study methods include 1) site-specific literature and key informant searches regarding local organization of services and local services policies and recommendations for autistic adults in each participating country; 2) on-line surveys of knowledge, experiences and opinions of experts, adult service providers, autistic adults, and carers of autistic adults regarding local current care practices, perceived service gaps, examples of local best practices, and suggestions for improving existing care strategies. Survey questions were derived from ‘external referents of care’, i.e., published adult services and care recommendations, and survey answer choices were designed to gauge how closely the respondent believes the local situation ‘fits’ the recommendations.

Results: Local literature and informant searches yielded complex views of variation in services organization across EU states at the national, regional, and municipal levels for the public and private sectors. The number and geographic distribution of autism-specific organizations providing services is highly diverse across countries, but with geographic clustering in major urban areas and capital cities. There is considerable variation in the public-private sector balance in services provision both between AND within countries. The private sector appears to be the core knowledge and competence base in adult services and in many countries is the main provider of autism-specific adult services. Even within countries, however, there may be significant inequalities in the public and private coverage among different regions and the level of development and specialization of the services offered by private organizations may be limited. The study is ongoing, with results from the on-line surveys to come.

Conclusions: Even in its preliminary stages, the investigation thus far has yielded an overarching view on the state of services for autistic adults and elders in the EU, a state which appears to rest on the balance between public and private sector contributions. Preliminary results from the on-line survey to be presented will illustrate the concordance between published autistic adult services recommendations and real-world experiences across the EU. Final study results will support EU policy makers and service providers on strategies for autistic adult services.