Division of Developmental and Behavioral Health, Children's Mercy Kansas City, Kansas City, MO.
Department of Pediatrics, UMKC School of Medicine, Kansas City, MO.
J Dev Behav Pediatr. 2021 Jan 1;42(1):73-75. doi: 10.1097/DBP.0000000000000894.
Brian is a 6-year-old boy who was diagnosed with autism spectrum disorder (ASD) and global developmental delay at age 2. He has no other health conditions of note. Brian lives with his parents and an older brother, who also has ASD, in a rural area 2 hours from the center where he was diagnosed. Brian has a history of intermittent self-injurious behaviors (head-banging, throwing himself onto the floor, etc.) that regularly result in bruising, intense and lengthy tantrums, and aggression toward family and teachers. Brian will occasionally indicate items that he wants, but otherwise has no functional communication skills. Over the past 18 months, Brian's challenging behaviors have waxed and waned. The regional special education program is not equipped to safely manage his behaviors, and there are no in-home or center-based agencies that provide applied behavior analysis (ABA) available. Brian's developmental pediatrician initiated guanfacine (eventually adding a small dose of aripiprazole) and referred the family to psychology for weekly telehealth behavioral parent training to address behavioral concerns using the Research Units in Behavioral Intervention curriculum.1Brian's behavioral problems decreased during the initial weeks of the COVID-19 crisis, when he no longer had to leave home or attend special education. However, as summer continued, his behaviors worsened substantially (regular bruising and tissue damage, numerous after-hours consultations with his psychologist and developmental pediatrician, and one trip to the emergency department). The intensity of Brian's behaviors (maintained primarily by access to tangible items and escape from demands) made progress with behavioral supports slow and discouraging for his parents. Other psychosocial stressors coalesced for the family as well, including employment loss, limited social support because of social distancing requirements, and illness of one of his parents. The developmental pediatrician continued to modify the medication regimen over the summer, transitioning Brian from guanfacine to clonidine and increasing his aripiprazole incrementally (with clear increased benefit); hydroxyzine was also used as needed during the episodes of highest intensity.Despite the availability of best-practice guidelines for children with Brian's presenting concerns,2 a confluence of barriers (geographic, economic, ABA work force, global pandemic, etc.) present serious questions for his family and care team related to the next steps in Brian's care. Should he attend in-person school in the fall, knowing that the available program may have limited educational benefit and increase his risk of COVID-19 exposure (not to mention self-injury)? Would the potential benefits of cross-country travel to an intensive behavioral treatment program outweigh the associated psychosocial and economic stressors? How else can the virtual care team support this family?
布赖恩是一个 6 岁男孩，他在 2 岁时被诊断患有自闭症谱系障碍（ASD）和全面发育迟缓。他没有其他健康问题。布赖恩和他的父母以及一个患有 ASD 的哥哥住在农村，距离他接受诊断的中心有 2 小时的路程。布赖恩有时会出现自伤行为（撞头、摔在地上等），这些行为经常导致瘀伤、长时间的强烈发脾气和对家人和老师的攻击行为。布赖恩偶尔会表示他想要的东西，但除此之外，他没有任何功能性的沟通技能。在过去的 18 个月里，布赖恩的挑战行为时好时坏。该地区的特殊教育项目没有能力安全地管理他的行为，也没有提供应用行为分析（ABA）的家庭或中心机构。布赖恩的发育儿科医生开始给他服用胍法辛（后来又加了小剂量的阿立哌唑），并将他的家人转介给心理医生，每周进行一次远程健康行为家长培训，使用研究行为干预课程来解决行为问题。1 在 COVID-19 危机的最初几周，当他不再需要离开家或接受特殊教育时，布赖恩的行为问题有所减少。然而，随着夏天的继续，他的行为严重恶化（经常出现瘀伤和组织损伤，多次在下班后咨询他的心理学家和发育儿科医生，以及一次去急诊室）。布赖恩的行为强度（主要通过获得有形物品和逃避要求来维持）使他的父母在行为支持方面的进展缓慢且令人沮丧。家庭也面临着其他心理社会压力源，包括失业、由于社交距离要求而有限的社会支持，以及他的一位父母生病。发育儿科医生在整个夏天继续调整药物治疗方案，将布赖恩从胍法辛转换为可乐定，并逐渐增加阿立哌唑的剂量（明显增加了益处）；在强度最高的发作期间，还按需使用了羟嗪。尽管有针对布赖恩所呈现问题的儿童的最佳实践指南，2 但各种障碍（地理、经济、ABA 劳动力、全球大流行等）给家庭和护理团队带来了严重的问题，涉及到布赖恩护理的下一步。如果他在秋季参加面对面的学校，他是否知道可用的课程可能没有什么教育益处，并且会增加他感染 COVID-19 的风险（更不用说自伤了）？长途旅行到强化行为治疗项目是否会带来潜在的好处，超过相关的心理社会和经济压力源？虚拟护理团队还能如何支持这个家庭？
