Autism care pathway in Europe

[EN] 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, diagn...

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Detalles Bibliográficos
Autores: Mendez, Maria A., Oakley, Bethany, Canitano, Roberto, Tinelli, Michela, Knapp, Martin, Cusack, James, Parellada, Mara, Violland, Pierre, Derk Plas, Jan R., Murphy, Declan G.M., Quoidbach, Vinciane, Arango, Celso, San Jose Cáceres, Antonia, Canal Bedia, Ricardo, Bejarano Martín, Álvaro, arango
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2023
País:España
Institución:Universidad de Salamanca (USAL)
Repositorio:GREDOS. Repositorio Institucional de la Universidad de Salamanca
OAI Identifier:oai:gredos.usal.es:10366/168819
Acceso en línea:http://hdl.handle.net/10366/168819
Access Level:acceso abierto
Palabra clave:Autism
Diagnosis
Early intervention
Early screening
Policy recommendations
Autistic Disorder
61 Psicología
3212 Salud Publica
6105 Evaluación y Diagnostico en Psicología
trastorno autístico
diagnóstico
Descripción
Sumario:[EN] 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.