Abstracts

Rationale: Hallmarks of autism spectrum disorder (ASD) include deficits in communication, difficulty coping with changes in environment, and marked distress when interrupted or re-directed from routine; aggression and self-injury, although not diagnostic of ASD, are also common in autistic children. Such behaviors present an added challenge in children undergoing epilepsy surgery, especially when long term invasive monitoring is involved. Barriers to epilepsy surgery in children include practitioner bias, parental fear, and hospital concerns over safety, which are only magnified in the setting of ASD. We present our experience at a major referral center for the dual diagnoses of autism and medically intractable epilepsy to demonstrate the approach and techniques employed to improve access to surgery in this population. Methods: Hospital records of 57 patients with ASD and 57 randomly selected control patients who underwent epilepsy surgery over the last 10 yeas were reviewed to assess the effectiveness of inpatient management methods, with a focus on any additional measures required in autistic cases. Detailed review of epilepsy surgery patient care protocols was also performed. Results: Procedures and support services focusing on extensive pre-operative preparation of the family included familiarizing the patient and caregivers with the pre-surgical, anesthetic, intraoperative, and post-operative care plans (see Table). Surgery was successfully performed according to clinical plan in all cases, regardless of the presence or severity of autism, even in patients with a documented history of aggression, self-injury, and inability to control impulse in the clinical setting. Compared to the control population, autistic patients had lower pain scores after epilepsy surgery, but were more frequently perceived as combative by hospital staff, and required an increased use of medications including but not limited to narcotics, typical, and atypical antipsychotics to control disruptive behaviors interfering with clinical care. In autistic patients undergoing invasive monitoring, the use of restraints was occasionally required to ensure safety and to protect the electrode montage and leads during monitoring. Conclusions: The comprehensive approach aimed at minimizing stress to the autistic patient and the family was highly effective in facilitating epilepsy surgery for patients with ASD, including those undergoing invasive monitoring. Issues related to aberrant behaviors are to be anticipated, but with experienced staff and proper use of medications and restraints, it is possible to prevent self-injury and proceed with the treatment plan. Family involvement and an extensive system of support through all stages of the process were deemed crucial to the overall success of surgery.