Individuals severely affected by an autism spectrum disorder, particularly those with intellectual disability, significant expressive language impairments or self-injurious behavior, have been understudied. Up to 50 percent of children with autism fail to develop functional language, 30 to 50 percent have intellectual disability, and up to 55 percent have a lifetime incidence of self-injurious behavior.
Adequate phenotypic and biological data from severely affected individuals are lacking. This gap in our knowledge is particularly striking given that communicative and cognitive abilities are the best predictors of long-term outcomes in children with autism. Barriers to studying severely affected children include challenges in their recruitment and participation in outpatient research studies, limited contact of most investigators with this population, and a relative lack of validated measures for characterizing these individuals.
Matthew Siegel and his co-investigators in the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC) have developed a research platform for advancing the clinical assessment and treatment of patients with severe autism. Each year, more than 1,000 children and adolescents with autism and serious behavioral disturbance are admitted to the six specialized psychiatric hospital units that comprise the ADDIRC. The patient population is heavily weighted toward individuals severely affected by autism.
Siegel’s team aims to establish multi-site data collection procedures and test these procedures in a prospective study of 500 participants in the ADDIRC’s inpatient population. The goal is to develop a comprehensive registry of clinical and biological data on severely affected children and adolescents with autism. The researchers plan to look at the dimensions of expressive language ability, emotional regulation, psychiatric co-morbidity, aggression, self-injurious behavior and intelligence, and to examine the relationships among these critical factors.