*Department of Pediatrics, Tufts New England Medical Center, The Floating Hospital for Children, Boston, MA; †Department of Pediatrics, Boston Medical Center, Boston, MA.
J Dev Behav Pediatr. 2014 Jan;35(1):82-4. doi: 10.1097/DBP.0000000000000024.
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?
朱莉是一个 4 岁的女孩，患有自闭症谱系障碍（ASD），她因严重的单侧髋关节疼痛和跛行到急诊室就诊。初步评估表明炎症标志物增加，血液涂片上有原始细胞。骨髓活检显示急性淋巴细胞白血病（ALL），朱莉入院接受诱导化疗。朱莉在本次就诊前 1 年被诊断为 ASD。她的父母在她出生前从中国移民到美国，他们表示，接受 ASD 的诊断需要一些时间，但他们在解决她的行为挑战方面越来越有信心，对她所取得的进展也越来越满意。现在他们担心在住院期间可能会失去服务。在诊断时，朱莉正在一家医院的中心接受家庭行为疗法（应用行为分析）、言语治疗和职业治疗。此外，她还有一个个性化教育计划，并就读于一所专门为 ASD 儿童开设的特殊学前班。随着朱莉住院时间的延长，她的医疗团队开始报告更多与她沟通的挑战，没有她父母中的一方在场，进行常规护理（例如，获得生命体征）的困难，睡眠中断，以及安全问题（例如，朱莉经常爬上窗台，增加了她的跌倒风险）。作为她的初级保健临床医生，医院团队请你来帮助弥合沟通和行为方面的鸿沟——你接下来会怎么做？
