Advancing hospital care for children on the autism spectrum: The time is now

No matter where in the hospital you work, you likely have encountered a child on the autism spectrum. If you have ever thought to yourself why these encounters seem more frequent or have felt unsure about how exactly to adapt your care to meet the patient’s needs, you are not alone.

Whether presenting in a mental health crisis or for another medical need, estimates suggest that children with autism spectrum disorder (ASD) are hospitalized more frequently than their peers, remain hospitalized longer, and are more likely to experience safety events while hospitalized. Staff and providers caring for patients report limited training on how to adapt care. Limited access to community-based services and adverse healthcare experiences can lead to poor long-term health outcomes for autistic individuals, leading experts to call for advances in equitable service delivery in healthcare settings.

Faculty and staff at Baylor College of Medicine and Texas Children’s Hospital have begun research and clinical work to address this critical need. In a recent focus group study, parents of children with ASD pointed to a “whole-child approach” for improving their healthcare experiences. Staff and providers should consider factors such as:

• How the child communicates (e.g., do they use words or pictures, do they need simplified instructions).
• Sensory supports (e.g., providing sensory coping items, dimming lights, avoiding loud conversations).
• Behavioral accommodations (e.g., avoiding trigger words in front of the child).
• Medical supports (e.g., prioritizing procedures).
• Safety supports (e.g., using safety equipment).

Families often serve as the best advocates and informants for their child, so teams should gather key support information early while also considering family stressors. In addition, families value open communication with their healthcare teams, including feeling heard and trusted. They value open-mindedness and flexibility (e.g., in adapting routine procedures), consideration of their child’s needs past the confines of the hospital environment (e.g., considering how a hospital experience, whether good or bad, might impact home life after discharge), and feeling as though teams were knowledgeable and comfortable in caring for their child (particularly for children with behavioral concerns).

While hospitals have started making strides to advance care, staff, providers, leaders and policy-makers should continue to advocate for the incorporation of practices to improve the healthcare experiences of autistic individuals. Providers and staff can take steps to individualize care (e.g., play a favorite song during a difficult procedure). Leaders can advocate for multidisciplinary care, including the incorporation of staff with specialty training (learn more about our Behavior Analysis and ASD/IDD Team on Texas Children’s Facebook and Instagram pages!), and adopt system-wide initiatives (e.g., care pathways, staff education, social stories- see our emerging TCH bank!) to advance care. Policy makers can advocate for expansion of services across the healthcare continuum, to address preventable hospitalizations. The voices of families and individuals with ASD should be included along the way.

With ASD diagnoses reaching 1 in 36, accessible healthcare will continue to be a growing need. The time is now to meet this need!

By Dr. Elizabeth Klinepeter assistant professor, Department of Pediatrics, psychology division, Baylor College of Medicine, licensed psychologist, Texas Children’s Hospital