Meeting the healthcare needs of the heterogeneous population of children with autism spectrum disorder (ASD) poses a unique set of difficulties for an already burdened healthcare system during a pandemic such as the current COVID-19 crisis. Children with ASD experience the same childhood illnesses as typically developing children but are also at increased risk for a host of other medical conditions such as gastrointestinal issues, neurologic issues, and psychiatric conditions (Liu et al., 2017). As a result, children with ASD often require increased specialty healthcare compared to children without ASD such as increased time spent in acute, inpatient settings (Croen et al., 2006). Children with ASD are more likely to be hospitalized for routine injuries and visit the Emergency Department (ED) more often compared to typically developing children (McDermott, Zhou, & Mann, 2008).
Complicating the challenges of meeting this increased need for medical care is the fact that children with ASD present with symptoms, such as restricted and repetitive interests, difficulty with routine changes, and deficits in social communication that may impede the delivery of this care. These symptoms can negatively impact medical appointments and can lead to increased use of restraint or sedation to complete routine medical procedures (Croen et al., 2006). However, the availability of guidance regarding the use of behavioral strategies to work with patients with ASD has increased in the literature (Riviere, Becquet, Peltret, Facon, & Darcheville, 2011; Stuesser, and Roscoe, 2020). Consultation from a behavior analyst (i.e., Board Certified Behavior Analyst, BCBA) or someone with training in implementing behavioral interventions with this population can dramatically reduce the difficulties presented in medical settings by children with ASD. For example, de-escalation strategies such as providing access to preferred items/activities or attention and reducing demands can eliminate triggers for problem behavior or reduce the likelihood of problem behavior escalating into a crisis. Additionally, when triggers can’t be avoided and problem behavior results, practitioners trained in the use of effective physical management strategies can use blocking and redirection to maintain the safety of both the caregivers, patients, and clinicians providing care.
The advanced training in applied behavior analysis and understanding of behavioral principals that are part of the training for BCBAs can equip them to assist healthcare providers in identifying potential triggers for problem behaviors. These include gathering direct and indirect data to identify the underlying causes of challenging behavior and the application of reinforcement-based procedures to increase adaptive replacement behaviors such as compliance or tolerance. Common triggers to problem behavior include the restriction of preferred items or activities, restricted or diverted attention and escape from demands or aversive situations (Beavers et al., 2013). Identifying the specific triggers that are most likely to evoke a particular child’s problem behavior guides a behavior analyst’s recommendations regarding individualized strategies for eliminating or reducing the adverse aspects of an encounter with a medical provider. Additionally, supplemental education for providers is available via crisis management training programs. These training programs can be completed via live didactic instruction to teach users how to safely prevent, manage, and de-escalate crisis situations displayed by children and adolescents with developmental disabilities. Some specific curricula have been designed that focus on ASD and train users to face the unique challenges of working with this population. For example, in our own hospital system we have provided training to nurses and nurse managers, rehab specialists, sedation specialists, technicians, paramedics, and security officers. With the support of trainers, users such as these can learn to independently implement crisis management in their practice settings to reduce the reliance on chemical or mechanical restraint.
The challenges faced by the healthcare system when providing medical care to children with ASD and challenging behaviors are exacerbated when that child is also diagnosed with an infectious disease. As a recent example, a 17-year old male diagnosed with ASD presented in our ED after displaying symptoms of a viral infection and was later diagnosed with COVID-19. Upon admission to the hospital, the child began eloping (i.e., bolting) from the isolation room to which he had been confined as an infection prevention measure. Elopement is particularly difficult to manage in the hospital due to constraints on staffing and the inherent limitations of the environment. Hospitals are less than optimal settings for managing problem behavior due to tight confined patient rooms, large open hallways, the presence of potentially dangerous or expensive medical equipment, and sterile or over-stimulating environments. These limitations can prevent effective physical management and increase the likelihood of a crisis situation often resulting in more intrusive strategies. In this case, elopement was particularly dangerous due to the increased risk for spread of exposure to Coronavirus. For this patient, case consultation provided by behaviorally trained professionals included working directly with hospital staff to engineer the environment and increasing the staff to patient ratio so that elopement attempts could be blocked by individuals wearing personal protective equipment. Interviewing the patient’s caregiver and conducting observations established that the patient primarily engaged in elopement to access preferred items and to escape from environments he found to be aversive. This information was in turn used to further inform strategies aimed at preventing elopement attempts, which included enriching the patient’s environment by adding preferred items and activities to his hospital room. Following implementation, elopement attempts decreased and the patient was able to remain in isolation to prevent further exposure for staff or other patients.
Caring for the medical needs of children with ASD can be further complicated by the presenting symptoms associated with this developmental disability. However, healthcare professionals and behavior analyst or behaviorally trained practitioners can work in concert to develop a plan of care. By considering both their medical and behavioral health needs in amalgamation, we are able to provide continuity of care and ensure individualized treatment for these patients.
Dr. Pavlov is a psychologist for the Intensive Outpatient and Crisis Admission Programs at the Marcus Autism Center and Dr. Muething is a psychologist program manager for the Intensive Outpatient Program at the Marcus Autism Center in Atlanta, GA. You may contact the authors at email@example.com or 404-785-4456.
Beavers, G., Iwata, B., and Lerman, D. (2013). Thirty years of research on the functional analysis of problem behavior. Journal of Applied Behavior Analysis, 46, 1-21. doi: 1-21. 10.1002/jaba.30.
Croen, L.A., Najjar, D.V., Ray, G.T., Lotspeich, L., and Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118, 1203-1211. https://doi.org/10.1542/peds.2006-0127
Liu, G., Pearl, A. M., Kong, L., Leslie, D. L., & Murray, M. J. (2017). A profile on Emergency Department utilization in adolescents and young adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 47, 347-358. https://doi.org/10.1007/s10803-016-2953-8
McDermott, S., Zhou, L. and Mann, J. (2008). Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disorders, 38, 626–633. https://doi.org/10.1007/s10803-007-0426-9
Riviere, V., Becquet, M., Peltret, E., Facon, B. and Darcheville, J.C. (2011). Increasing compliance with medical examination requests directed to children with autism: Effects of a high‐probability request procedure. Journal of Applied Behavior Analysis, 44, 193-197. doi:10.1901/jaba.2011.44-193
Stuesser, H.A. and Roscoe, E.M. (2020). An evaluation of differential reinforcement with stimulus fading as an intervention for medical compliance. Journal of Applied Behavior Analysis, 9999, 1-16. doi:10.1002/jaba.685