Autism with co-occurring epilepsy care pathway in Europe

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

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Méndez, M. A., Canitano, R., Oakley, B., Cáceres, A. S. J., Tinelli, M., Knapp, M., Cusack, J., Parellada, M., Violland, P., Plas, J. R. D., 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
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
13
Publication authors identified as autistic
2 / 13 (15.4%)
  1. María Andreina Méndez
  2. Roberto Canitano
  3. Bethany Oakley
  4. Antonia San José Cáceres
  5. Michela Tinelli
  1. Martin Knapp
  2. James Cusack *
  3. Mara Parellada
  4. Pierre Violland
  5. Jan Roderik Derk 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 01:00.

Cited references
34
With a DOI
26
Without a DOI, from raw bibliography text
7
1 / 34 (2.9%) cited references include at least one author identified as autistic.
References with data to complete
5 / 34 (14.7%)
References with detected author names
29 / 34 (85.3%)
Without detected author names
5
Without a structured title
3
Without a stable identifier
7
References with raw author names still to review
3
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
165
From DOI or external metadata
165
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
25 / 165 (15.2%) names are linked to an author already present in AutiHub. 140 / 165 (84.8%) names are not yet linked.
Names linked to a person identified as autistic
1 / 165 (0.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 1 / 25 (4.0%). Distinct people identified as autistic: 1 / 162 (0.6%).
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