The Diagnostic Odyssey of Autism Spectrum Disorder.
The Diagnostic Odyssey of Autism Spectrum Disorder.
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DOI：
10.1542/peds.2016-4300c
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发表时间：
2018-04
期刊：
影响因子：
8
通讯作者：
Kuo AA
中科院分区：
文献类型：
--
作者：
Lappé M;Lau L;Dudovitz RN;Nelson BB;Karp EA;Kuo AA
自闭症谱系障碍(ASD)是一种神经发育障碍，其特征是在社会沟通和互动中遇到挑战，以及受限或重复的行为、兴趣或活动。尽管自闭症症状通常在儿童早期表现出来，但许多人在获得自闭症诊断和相关服务方面遇到了延误。在这项研究中，我们确定了影响父母对儿童ASD诊断经验的个人、社会和结构性因素。25名自闭症儿童的父母参加了60到90分钟的半结构化面谈。采访被逐字记录和转录。采用扎根理论的方法对成绩单进行分析。这种归纳方法使分析人员能够确定与参与者的儿童ASD诊断经验相关的关键主题。ASD的诊断过程反映了一个包括3个关键阶段的奥德赛：诊断前阶段，在这一阶段中，“理解儿童差异”是参与者经历的一个主要特征；在诊断过程中，当“导航诊断”提出影响ASD诊断时机的系统性障碍时；以及诊断后阶段，当参与者的“连接到服务”的经历表明个人努力在获得护理方面发挥着重要作用。在这项研究中，我们强调了个人、社会和结构性因素，这些因素在孩子被诊断为自闭症之前、期间和之后影响父母的经历。我们的发现表明，在诊断奥德赛期间，需要对自闭症个人及其家人提供更一致和持续的支持，以及更好地代表自闭症整个生命过程中与自闭症相关的各种经历和症状的资源。
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by challenges in social communication and interaction and restricted or repetitive behavior, interests, or activities. Although ASD symptoms generally manifest in early childhood, many individuals experience delays accessing an autism diagnosis and related services. In this study, we identify the individual, social, and structural factors that influence parents’ experiences of children’s ASD diagnosis. Parents of 25 children with autism participated in 60- to 90-minute semistructured in-person interviews. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using the method of grounded theory. This inductive method allowed analysts to identify key themes related to participants’ experiences of children’s ASD diagnosis. The process of ASD diagnosis reflects an odyssey that includes 3 key phases: the prediagnosis phase, in which “Making Sense of Child Difference” is a primary characteristic of participants’ experiences; the during-diagnosis phase, when “Navigating Diagnosis” suggests systematic barriers that influence the timing of ASD diagnosis; and the postdiagnosis phase, when participants’ experiences of “Connecting to Services” point to the important role that personal efforts play in gaining access to care. In this study, we highlight individual, social, and structural factors that influence parent experiences before, during, and after their child’s autism diagnosis. Our findings indicate the need for more consistent and continuous support for autistic individuals and their families during the diagnostic odyssey, as well as resources that better represent the diversity of experiences and symptoms associated with autism across the life course.