Toilet training is a common concern among individuals with autism spectrum disorder (ASD). This is especially concerning, given the negative effects associated with toileting accidents. These include additional stress for caregivers due to incurred expenses and burden, barriers to inclusion in activities with peers (e.g., several summer camps require children to be toilet trained), and interference with social development. Although there is support for interventions for urinary incontinence, there is much less research on effective treatments for incontinent bowel movements (i.e., encopresis). To date, studies evaluating treatments for encopresis have either used lengthy and invasive procedures or weak research designs (e.g., only a few participants).
We have designed a 2-week multidisciplinary intervention for encopresis (MIE), consisting of both medical and behavioral components. Specifically, patients are first screened by a gastrointestinal specialist and assessed and treated for any constipation or other potential medical complications. Following this, the individuals attend daily outpatient appointments for 2 weeks in which behavioral clinicians conduct structured sits on the toilet to promote independent bowel movements (BMs). If an independent BM does not occur, a suppository is administered to produce one and the child is prompted to remain on the toilet. As a result, continent bowel movements are predictably evoked while the child is on the toilet, allowing for reinforcement with praise and preferred items/activities. The need for suppositories is then gradually decreased until the child is having independent BMs.
The purpose of the current study is to evaluate MIE using a large randomized clinical trial (RCT), addressing the Fiscal Year 2016 Autism Research Program Area of Interest of Therapies to Alleviate Conditions Co-Occurring with ASD. We will recruit 150 individuals diagnosed with ASD age 5-12, randomizing them to 2 weeks of MIE , 1 week of MIE, or treatment as usual (TAU) (behavioral consultation and medical intervention). We will evaluate MIE compared to TAU and determine the optimal treatment duration. This project is based on clinical and pilot data, which both show very promising results. When implemented in our clinical program, 93% of patients are successful. We have also evaluated MIE in a small RCT (n=20; randomized to MIE or waitlist control) and found that 80% of treatment participants were successful, whereas no participants in the control group achieved similar success.
This study will be the first large-scale clinical trial of a treatment for encopresis in individuals with ASD. In doing so, we will be setting the foundation for future research, including effectiveness studies of the MIE interventions. This work will eventually result in guidelines that can be distributed to clinicians in the community that frequently encounter encopresis as a presenting concern for this population. Given that 59% of children with ASD have toileting deficits, the results of this study will impact a large number of individuals in the ASD population. By promoting treatment methods for encopresis, children with ASD and their families will benefit through decreased parental stress, increased inclusion in the community, and removal of a potential barriers to developing social and other adaptive skills. Furthering support for the benefit of this program, pilot data suggest that caregivers rate the intervention as extremely acceptable and the administration of suppositories (or more invasive medications) is a practice that the majority of children are undergoing prior to starting the study. Therefore, the only potential risk is that of time/effort of attending the interventions and negative experiences related to the administration of the suppository if this is an aversive event for the child. Overall, it is clear that developing treatments for bowel movement accidents is an understudied area that has the potential for tremendous impact on the ASD community. |