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具有挑战性的案例:自闭症谱系障碍的家庭引导

Challenging Case: Family Navigation for Autism Spectrum Disorder.

作者信息

Lin Ingrid Y, Stahmer Aubyn C, Feinberg Emily, Feldman Heidi M, Deras Melisa, Augustyn Marilyn

机构信息

Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, School of Medicine, Stanford University, Stanford, CA.

Department of Psychiatry and Behavioral Sciences, University of California, Davis, MIND Institute, Sacramento, CA.

出版信息

J Dev Behav Pediatr. 2024;45(6):e596-e598. doi: 10.1097/DBP.0000000000001322. Epub 2024 Oct 23.

DOI:10.1097/DBP.0000000000001322
PMID:39446066
Abstract

Leo is a 28-month-old boy from a monolingual Spanish-speaking family who was referred to a developmental-behavioral pediatrics (DBP) clinic for concerns regarding autism. His parents migrated to the United States 8 years ago and currently live and work on a farm. He was born in a US hospital after an uncomplicated pregnancy and has been generally healthy. His parents first became concerned about his development when he was 16 months old. He stopped saying mama/dada in Spanish and started lining up random objects. He had frequent temper tantrums and was difficult to console during unexpected changes in his routine. He screened positive on the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) at his 18-month well-child visit, and his pediatrician referred him to the local early intervention program. Calls from the early intervention program to his parents were unanswered. At his 24-month well-child visit, he again screened positive on the M-CHAT-R/F, and his pediatrician placed a referral for a DBP consultation. During the DBP visit at 28 months of age, developmental testing indicated his receptive and expressive language skills to be in the extremely low range, with significant scatter in his cognitive and adaptive skills. Behavioral observations were consistent with parental history and showed differences in social communication and interaction, the presence of repetitive behaviors, and extreme distress with transitions. He was diagnosed with autism spectrum disorder. Recommendations, including referral to early intervention, applied behavior analysis therapy, speech and language therapy, audiology evaluation, and genetic testing, were discussed with his parents through an interpreter. An autism packet, written in Spanish, with detailed information about autism and community resources was given to the family. By the time of a follow-up DBP visit 6 months later, Leo had not started on any early intervention or therapeutic services. Where do you go from here?

摘要

利奥是一名28个月大的男孩,来自一个只说西班牙语的家庭,因自闭症问题被转介到发育行为儿科(DBP)诊所。他的父母8年前移民到美国,目前在农场生活和工作。他在一家美国医院出生,孕期正常,一直以来总体健康。他16个月大时,父母首次对他的发育情况表示担忧。他不再说西班牙语的“妈妈/爸爸”,开始随意排列物品。他经常发脾气,日常生活意外变化时很难安抚。他18个月健康体检时,使用《幼儿自闭症修正检查表(修订版及后续)》(M-CHAT-R/F)筛查呈阳性,他的儿科医生将他转介到当地的早期干预项目。早期干预项目给其父母打电话无人接听。他24个月健康体检时,再次使用M-CHAT-R/F筛查呈阳性,他的儿科医生为其安排了发育行为儿科会诊。在28个月大时的发育行为儿科会诊中,发育测试显示他的接受性和表达性语言技能极低,认知和适应技能存在显著差异。行为观察结果与家长描述一致,显示出社交沟通和互动方面的差异、重复行为的存在以及过渡时的极度痛苦。他被诊断为自闭症谱系障碍。通过翻译与他的父母讨论了相关建议,包括转介到早期干预、应用行为分析疗法、言语和语言治疗、听力评估以及基因检测。给了这个家庭一份用西班牙语编写的自闭症资料包,其中包含有关自闭症和社区资源的详细信息。6个月后的发育行为儿科随访时,利奥尚未开始任何早期干预或治疗服务。接下来该怎么办呢?

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引用本文的文献

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Family Navigation for Children with Autism: A Scoping Review of Quantitative and Qualitative Evidence.自闭症儿童的家庭导航:定量和定性证据的范围综述
J Autism Dev Disord. 2025 Mar 18. doi: 10.1007/s10803-025-06798-9.