Dravet Syndrome: A Primer for Behavior Analysts

Abstract

Dravet syndrome (DS) is a rare and severe developmental and epileptic encephalopathy that is characterized by prolonged seizures beginning in the first year of life, followed by debilitating and complex features, including sleep disturbances, feeding problems, social-emotional difficulties, speech deficits, and cognitive and motor impairments. While research with the DS population has been primarily focused on reducing seizures and other medical symptoms of DS, caregivers report many additional symptoms, such as behavior and cognitive impairment, that significantly impact their loved one with DS and the caregiver and family quality of life. As is common in rare disease research, medical and pharmacological research often takes precedent due to the significant burden of disease. However, therapies based on the science of applied behavior analysis could potentially address the behaviors, skill deficits, and cognitive challenges associated with DS. This article aims to provide an introduction to the complex and unique characteristics of DS for those working in the field of behavior analysis, with the hope of facilitating innovative research to discover effective applied behavior analytic interventions and treatments to help individuals with DS receive the needed supports and live a higher quality of life.