Measurement of Challenging Behaviors and Child Engagement in Youth with Creatine Transporter Deficiency

Background: Challenging behaviors during standardized testing are prevalent among children with autism and intellectual disability (ID). Such challenging behaviors are a frequent focus of intervention, as they may decrease the child’s ability to function independently and participate in the community. Standardized measurements of cognitive functioning generate scores that describe performance on developmental tasks relative to typically developing peers but fail to consider behaviors that may impact performance (e.g. disruptive behaviors, participant engagement). This is unfortunate, since a reduction in challenging behaviors may be one of the first outcomes of intervention, and a more proximal measure of improvement than standardized test scores. To date, no research has examined the specific profile of challenging behaviors in Creatine Transporter Deficiency (CTD), a rare genetic disorder associated with intellectual disability and a high risk of autism spectrum disorder.

Objectives: Using video samples of standardized assessments, the current study aims to quantify the amount of time the child is demonstrating challenging behaviors and the amount of time the child is appropriately engaged.

Methods: The sample consists of 20 male participants with CTD, each of whom have at least two time points of data collection (6 months apart). A review of qualitative interview data with parents of children with CTD and review of previously collected video recordings of standardized assessments informed the design of a behavioral coding scheme. Using a linguistic coding software, EUDICO Linguistic Annotator (ELAN, 2018), raters will utilize 10-minute video samples of the Mullen Scales of Early Learning (MSEL; Mullen, 1995) or the Wechsler Achievement Scale of Intelligence (WASI; Wechsler & Hsiao-pin, 2011) to code for behavioral patterns exhibited in this population.

Results: Videos from 3 participants were coded from two time points each. 1) adult time spent attempting to engage the child; 2) presence of disruptive behaviors (crying/whining, inappropriately touching or grabbing objects, property destruction, aggression, and eloping); and 3) duration of child engagement (appropriate listening, waiting, or acting). Findings from the first three participants indicate that with an average duration of Demands Placed at approximately 8.9 minutes, the ratio of Disruptive to Engaged time during standardized testing ranged from [0:9.7 to 2.5:4.0] at Time 1 and [0:9.8 to 3.0: 2.9] at Time 2. Coding for the videos from the remaining 17 participants is underway and will be available for presentation.

Conclusions: Quantifying challenging behaviors that occur during cognitive testing may provide an important outcome measure that could be sensitive to intervention and more objective than parent or teacher report. If sensitive to intervention, duration of time spent in challenging behavior and duration of child engagement could be more proximal outcome measures than a change in standardized test scores.