Autism care pathway in Europe

Autor: Maria A. Mendez, Bethany Oakley, Roberto Canitano, Antonia San José-Cáceres, Michela Tinelli, Martin Knapp, James Cusack, Mara Parellada, Pierre Violland, Jan R. Derk Plas, Ricardo Canal-Bedia, Alvaro Bejarano-Martin, Declan G.M. Murphy, Vinciane Quoidbach, Celso Arango
Jazyk: angličtina
Rok vydání: 2023
Předmět:
Zdroj: European Psychiatry, Vol 66 (2023)
Druh dokumentu: article
ISSN: 0924-9338
1778-3585
DOI: 10.1192/j.eurpsy.2023.2435
Popis: Abstract Background Autism is a lifelong complex neurodevelopmental condition that affects brain development and behaviour with significant consequences for everyday life. Despite its personal, familial, and societal impact, Europe-wide harmonised guidelines are still lacking for early detection, diagnosis, and intervention, leading to an overall unsatisfactory autistic person and carer journey. Methods The care pathway for autistic children and adolescents was analysed in Italy, Spain and the UK from the perspective of carers (using a survey aimed at caregivers of autistic children 0–18 years old), the autistic community, and professionals in order to identify major barriers (treatment gaps) preventing carers from receiving information, support, and timely screening/diagnosis and intervention. Results Across all three countries, analysis of the current care pathway showed: long waits from the time carers raised their first concerns about a child’s development and/or behaviour until screening and confirmed diagnosis; delayed or no access to intervention once a diagnosis was confirmed; limited information about autism and how to access early detection services; and deficient support for families throughout the journey. Conclusions These findings call for policy harmonisation in Europe to shorten long wait times for diagnosis and intervention and therefore, improve autistic people and their families’ journey experience and quality of life.
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