Autism care pathway in Europe

Mendez, Maria A., Oakley, Bethany, Canitano, Roberto, San José-Cáceres, Antonia, Tinelli, Michela ORCID: 0000-0002-8816-4389, Knapp, Martin ORCID: 0000-0003-1427-0215, Cusack, James, Parellada, Mara, Violland, Pierre, Derk Plas, Jan R., Canal-Bedia, Ricardo, Bejarano-Martin, Alvaro, Murphy, Declan G. M., Quoidbach, Vinciane and Arango, Celso (2023) Autism care pathway in Europe. European Psychiatry, 66 (1). ISSN 0924-9338

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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.

Item Type:	Article
Official URL:	https://www.cambridge.org/core/journals/european-p...
Additional Information:	© 2023 The Author(s)
Divisions:	Personal Social Services Research Unit Health Policy
Subjects:	R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine J Political Science > JN Political institutions (Europe)
Date Deposited:	06 Nov 2023 14:24
Last Modified:	25 Apr 2024 17:09
URI:	http://eprints.lse.ac.uk/id/eprint/120652

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