Autism in Children and Adolescents with Epilepsy – Scoping Review and Adaptation of Clinical Practice Guidelines for Recognition, Referral and Diagnosis: A Report of the ILAE Task Force on Paediatric Psychiatric Issues

The ILAE Task Force on Paediatric Psychiatric Issues conducted a scoping review to identify existing guidelines for the referral, assessment, and communication of an autism diagnosis in children. A systematic search identified 19 clinical practice guidelines (CPGs), which were critically appraised using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. This tool assesses guideline quality across domains such as rigor, clarity, and applicability. The NICE guideline, Autism spectrum disorder in under 19s: recognition, referral and diagnosis, received the highest appraisal and was selected as the source for adoption/adaptation. Sixty-three recommendations were successfully adopted and adapted for children with epilepsy using a structured adaptation process (ADAPTE framework with Delphi consensus).

Draft: Autism in Children and Adolescents with Epilepsy – Scoping Review and Adaptation of Clinical Practice Guidelines for Recognition, Referral and Diagnosis: A Report of the ILAE Task Force on Paediatric Psychiatric Issues

Supplementary Material: Supplement 1 | Supplement 2 | Supplement 3a | Supplement 3b | Supplement 4 | Supplement 5 | Supplement 6 | Supplement 7

The draft paper is now open for public comments through 2 August 2026.

Comments

09 July 2026

Thank you for the opportunity to comment on this excellent and much-needed guideline. The manuscript addresses an important gap in pediatric epilepsy care. I suggest highlighting more clearly the epilepsy-specific rationale behind the adapted recommendations, as many remain closely aligned with the original NICE guidance. A brief discussion of developmental and epileptic encephalopathies, epileptic regression (e.g., EE-SWAS), and genetic epilepsies frequently associated with autism would strengthen the document. It would also be valuable to include practical implementation strategies for settings with limited multidisciplinary resources. Then, a concise section outlining future research priorities, including the role of genetics, EEG biomarkers, and digital tools, would enhance the long-term impact of this important document. Overall, I believe these additions would further increase its international relevance and usefulness. Well done and thank you!

Pasquale Striano (Italy)