Autism with co-occurring epilepsy care pathway in Europe

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Méndez, M. A., Canitano, R., Oakley, B. F., Cáceres, A. S. J., Tinelli, M., Knapp, M., Cusack, J., Parellada, M., Violland, P., Plas, J., Murphy, D., Quoidbach, V., & Arango, C. (2023). Autism with co-occurring epilepsy care pathway in Europe. European Psychiatry, 66(1), e61-e61. https://doi.org/10.1192/j.eurpsy.2023.2426

Publication date: 1 Jan 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
13
Publication authors identified as autistic
1 / 13 (7.7%)
  1. María Andreina Méndez
  2. Roberto Canitano
  3. Bethany F. Oakley
  4. Antonia San José Cáceres
  5. Michela Tinelli
  1. Martín Knapp
  2. James Cusack *
  3. Mara Parellada
  4. Pierre Violland
  5. J Plas
  1. Declan Murphy
  2. Vinciane Quoidbach
  3. Celso Arango

Abstract

BACKGROUND: Autism and epilepsy often occur together. Epilepsy and other associated conditions have a substantial impact on the well-being of autistic people and their families, reduce quality of life, and increase premature mortality. Despite this, there is a lack of studies investigating the care pathway of autistic children with co-occurring epilepsy in Europe. METHODS: We analyzed the care pathway for autistic children with associated epilepsy in Italy, Spain, and the United Kingdom from the perspective of caregivers (using a survey aimed at caregivers of autistic children 0-18 years old), the autistic community, and professionals, in order to identify major barriers preventing caregivers and autistic children from receiving timely screening and treatment of possible co-occurring epilepsy. RESULTS: Across all three countries, an analysis of the current care pathway showed a lack of systematic screening of epilepsy in all autistic children, lack of treatment of co-occurring epilepsy, and inappropriate use of antiepileptic drugs. A major challenge is the lack of evidence-based harmonized guidelines for autism with co-occurring epilepsy in these countries. CONCLUSIONS: Our findings show both heterogeneity and major gaps in the care pathway for autism with associated epilepsy and the great efforts that caregivers must make for timely screening, diagnosis, and adequate management of epilepsy in autistic children. We call for policy harmonization in Europe in order to improve the experiences and quality of life of autistic people and their families.

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Cited references
34
Total cited references integrated for this publication.
Cited references with an identified autistic author
0 / 34 (0.0%)
Cited author occurrences identified as autistic
0 / 165 (0.0%)
Among occurrences linked to AutiHub author records: 0 / 19 (0.0%). Distinct cited authors identified as autistic: 0 / 163 (0.0%).
Cited author occurrences linked to AutiHub author records
19 / 165 (11.5%)
Distinct linked cited authors: 17 / 163 (10.4%)
Linked cited-author occurrences not identified as autistic
19 / 19 (100.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 19 / 165 (11.5%). Distinct linked cited authors not identified as autistic: 17 / 17 (100.0%).
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