Julie is a 4-year-old girl with autism spectrum disorder (ASD) who presented to the emergency room with severe unilateral hip pain and limping. Initial evaluation indicated increased inflammatory markers and blasts on a blood smear. A bone marrow biopsy revealed acute lymphoblastic leukemia (ALL), and Julie was admitted for induction chemotherapy.
Julie was diagnosed with ASD 1 year before this presentation. Her parents, who had immigrated to the United States from China before her birth, indicated that it took them some time to accept the diagnosis of ASD but they were feeling more confident in addressing her behavior challenges and comfortable with the progress she had been making. They now expressed concerns about the possible loss of services in the setting of her hospitalization. At the time of diagnosis, Julie had been receiving in-home behavioral therapy (applied behavioral analysis), speech therapy, and occupational therapy at a hospital-based center. In addition, she had an individualized education plan and was enrolled in a specialized preschool classroom for children with ASD.
As Julie’s hospital stay became more prolonged, her medical care team started reporting more challenges communicating with Julie without the presence of 1 of her parents, difficulty conducting routine care (e.g., obtaining vitals), sleep disruption, and safety concerns (e.g., Julie would frequently climb on the window sill increasing her fall risk). As her primary care clinician, you are called by the hospital team to help bridge the communication and behavioral divide that has widened—what would you do next?
*Department of Pediatrics, Tufts New England Medical Center, The Floating Hospital for Children, Boston, MA;
†Department of Pediatrics, Boston Medical Center, Boston, MA.
Disclosure: The author declares no conflict of interest.