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. 2023 Sep 11;66(1):e81.
doi: 10.1192/j.eurpsy.2023.2435.

Autism care pathway in Europe

Maria A Mendez  1   2 , Bethany Oakley  3   4 , Roberto Canitano  5 , Antonia San José-Cáceres  1   2   4 , Michela Tinelli  6 , Martin Knapp  6 , James Cusack  7 , Mara Parellada  1   2   4   8   9 , Pierre Violland  4 , Jan R Derk Plas  4 , Ricardo Canal-Bedia  10 , Alvaro Bejarano-Martin  10 , Declan G M Murphy  3   4 , Vinciane Quoidbach  11 , Celso Arango  1   2   4   8   9
Affiliations

Autism care pathway in Europe

Maria A Mendez et al. Eur Psychiatry. .

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.

Keywords: autism; diagnosis; early intervention; early screening; policy recommendations.

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Conflict of interest statement

A.S.J.C. has received consultant fees from Roche and Servier. M.P. has been a consultant to or has received honoraria or grants from Otsuka, Exeltis, Janssen, Servier, and Exeltis. C.A. has been a consultant to or has received honoraria or grants from Acadia, Angelini, Biogen, Boehringer, Gedeon Richter, Janssen Cilag, Lundbeck, Medscape, Minerva, Otsuka, Pfizer, Roche, Sage, Servier, Shire, Schering Plough, Sumitomo Dainippon Pharma, Sunovion, and Takeda. D.G.M.M. has been a consultant for Roche, Servier, and Jaguar Therapeutics. R.C. has been a consultant for Servier. The other authors declare none.

Figures

Graph 1.
Graph 1.
Time in months from first concerns until screening visit.
Graph 2.
Graph 2.
Rating of time from first concerns to screening visit.
Graph 3.
Graph 3.
Time in months from screening visit until diagnosis confirmation.
Graph 4.
Graph 4.
Rating of time from screening visit until diagnosis confirmation.
Figure 1.
Figure 1.
Type of intervention funding in Italy, Spain, and the UK.
Graph 5.
Graph 5.
Time from diagnosis until publicly funded intervention in months.
Graph 6.
Graph 6.
Time from diagnosis until privately funded intervention in months.
Graph 7.
Graph 7.
Waiting time for public intervention.
Graph 8.
Graph 8.
Waiting time for private intervention.
See this image and copyright information in PMC

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