Child Passenger Safety Program for Autistic Youth with Unsafe Car Behavior: A Program Description

Shea Buckley, MEd, BCBA, CPST
Maneesha Agarwal, MD, FAAP
Mindy Scheithauer, PhD, BCBA-D

Autism is a common neurodevelopmental condition that impacts 1 in 36 children. Behavioral concerns are common among autistic youth and may be dangerous and a significant source of stress for families, particularly when exhibited while driving. When children with behavioral concerns are able to leave their safety car seat/harness/seat and travel around the vehicle when it is in motion, the risk of motor vehicle collision is increased. Particularly concerning behaviors may include aggression towards the driver, destruction to the vehicle, or vehicle elopement. Helping families identify appropriate devices to prevent the child from leaving their seat is a crucial strategy to prevent injury. When implementing this, other aspects of autism spectrum disorder (e.g., sensory sensitivities, communication deficits) are important to consider to maximize access to care and success of recommendations.

We developed a Child Passenger Safety Program tailored for autistic youth. The program is housed in a specialized autism clinic in the southeastern United States with a Board Certified Behavior Analyst certified as a Child Passenger Safety Technician with support from an occupational therapist. An initial assessment evaluates need and collects information about behavioral concerns. The therapist then provides recommendations and guides the caregiver through applying for and receiving appropriate reimbursement (when available) for an appropriate safety device. A subsequent appointment is scheduled for installation and follow-up on recommendations.

Over 9 months, the program has received 146 referrals and seen 45 unique patients. Of those 45 patients, we successfully installed 38 had safety devices. Based on a caregiver-completed questionnaire from patients seen in the program, the most common behavioral concerns in the car were elopement (100%), aggression (91%), and disruption (89%). 86% of caregivers endorsed difficulty transporting their child with one caregiver; 91% avoided taking their child places; and 63% missed appointments due to behavioral concerns. Most caregivers stopped a moving vehicle due to their child’s behavior (94%); 69% reported injuries from these behaviors; and 60% reported damage to the vehicle. Thus far, the program has been sustained financially through coverage from the child advocacy department of the affiliated children’s hospital and external philanthropic funds. Documented programmatic barriers include: the need for multidisciplinary collaboration for insurance to pay for devices, identifying devices for older clients, time-commitment to maintain the program (e.g., scheduling, following up on paperwork), and lack of CPT codes to cover the service.

There is a high need for programs that target transportation safety for autistic youth. By involving therapists that specialize in autism and tailoring appointment appropriately, we have successfully installed safety devices for this population. Future directions include improving the clinic’s financial sustainability, assessing acceptability, and evaluating efficacy with pre/post measures of car safety.

1. Attendees will be able to describe why autistic youth may exhibit a high rate of behaviors that create safety issues during transportation.
2. Attendees will describe how antecedent-based strategies (such as installing safety devices in a car) may reduce safety issues.
3. Attendees will identify barriers to sustaining programs related to transportation safety for autistic youth.