Dangerous, destructive, and disruptive behaviors are a more prevalent problem amongst individuals with autism spectrum disorder (ASD) than their typically developing peers. Research suggests that one third of children with ASD exhibit problem behavior in the clinically significant range. Many of these problem behaviors can be of such severity that they require exclusion from community/educational services and peers, or cause significant injury and can be life threatening for the individual or their caregivers. Problem behavior also negatively affects almost every facet of a caregiver’s daily life, and is a significant predictor of poor family functioning. In fact, problem behavior has been found to be a more significant predictor of parental stress than the severity of ASD symptoms themselves.
Fortunately there is a wealth of literature demonstrating that behavioral interventions can effectively address these problem behaviors. However, for the most severe problem behaviors these interventions may require short-term use of intensive services to bring the behavior under control and train caregivers to implement effective strategies that will decrease it over the long-term. Such services include the use of specialized facilities, a high child to staff ratio, and clinicians with highly developed expertise. As a result, there are very few clinical programs available to treat these children, and even fewer that are equipped to conduct clinical research on how to best treat these individuals. It is difficult to establish research programs on interventions because no single clinical program treats sufficient numbers to conduct larger clinical trials. Thus, in the parlance of drug development, these individuals represent an “orphan group” because they are a small percentage of the population, even though treating these behaviors represents a disproportionate cost.
To effectively treat severe problem behaviors in children with ASD it is necessary for treatments to maintain a high level of precision. This means employing rigorous data collection and analysis methods. However, data collection tools are limited to two main types: those that have been developed by clinicians with a minimum level of skill in software development, or those that are re purposed from software developed for some other purpose. Given that both of these options result in serious inefficiencies, data collection and analysis represents one of the most significant drivers of the costs of treatment for these individuals, which in turn contributes to waiting lists and limited access to services by families. Furthermore, the lack of an adequate tool for data collection prevents multi-site research collaboration.
This project will develop a data collection tool that increases staff and clinician efficiency in the treatment of severe problem behaviors exhibited by individuals with ASD. Development of this tool will reduce the cost of services, thereby decreasing waiting times, and increasing access to this critical form of treatment. Furthermore, by integrating data collection with an existing data repository at the Marcus Autism Center, this project will make it possible for the first time for clinical programs around the country to pool their clinical data for research purposes. Following the model developed by cancer researchers, we will make it possible to conduct clinical trials of effective treatment practices across clinical sites.