Parent-implemented treatment for repetitive behaviors in children with ASD: Using a novel telehealth approach to increase service access

In the wake of the COVID-19 pandemic, there is even more of an urgent need to provide effective supports for children with autism spectrum disorder (ASD) and their caregivers. This unprecedented situation has led to more children with ASD being home-schooled and caregivers having to serve in the dual role of parent and teacher. There are growing concerns that children with disabilities, including those with ASD, are not receiving adequate and specialized instruction because teachers cannot devote the time or resources truly needed to support all parents and children.

A recent SPARK survey of 8,000 parents of children with ASD found that 63% of parents reported severe disruptions to their children’s therapy services and only 35% of children were receiving remote services. This leads to significant concerns over developmental regression and loss of skills when children with ASD are unable to receive appropriate educational services. Further, this is a time of great stress and anxiety for most individuals, but for children with ASD who already struggle with being out of routine, they are more likely to have difficulty coping and adjusting to the current circumstances.

In autism, there is evidence that anxiety, lack of structure, and general uncertainty is associated with increased severity of restricted, repetitive behaviors and interests (RRBI), and approximately 95% of SPARK parents reported an increase in challenging behaviors during COVID-19. Thus, now is the time for effective treatments to help parents manage these difficult behaviors. This moment also has led to the realization that we need more and better teletherapy options and services. Even after this public health crisis, many parents of children with ASD will remain concerned about the safety of sending their children to schools or allowing non-family members to enter the household because their children often have co-occurring conditions that make them an even more vulnerable group.

While the effectiveness of telehealth interventions for children with ASD is emerging, early research suggests interventions delivered via telehealth for children with ASD may be just as effective as in-person interventions. Yet, we currently have no understanding of the effectiveness of RRBI interventions delivered remotely. Therefore, the overall goal of this project is to conduct a parallel group randomized controlled trial (RCT) comparing remote delivery of the Family-Implemented Treatment for Behavioral Inflexibility (FITBI) intervention (12-week intervention + 3 booster sessions over 6 months) to remote delivery of a parent education only (PE) control condition in a final sample size of 100 (3-9 years) children with ASD and high rates of ritualistic repetitive behaviors. We will use TORSH, a comprehensive secure online platform that enhances therapist-parent coaching via telehealth. Further, an important objective of this proposal is to examine child and parent factors associated with treatment response and uptake in order to advance translational research and knowledge on personalized intervention approaches.