Center for Research on Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics, Columbia University, New York, New York;
Department of Medicine, and.
Pediatrics. 2018 Apr;141(Suppl 4):S272-S279. doi: 10.1542/peds.2016-4300C.
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.
自闭症谱系障碍（ASD）是一种神经发育障碍，其特征是社交沟通和互动方面的挑战，以及受限或重复的行为、兴趣或活动。尽管 ASD 症状通常在幼儿期表现出来，但许多人在获得自闭症诊断和相关服务方面存在延迟。在这项研究中，我们确定了影响父母对孩子自闭症诊断体验的个体、社会和结构因素。
25 名自闭症儿童的父母参与了 60-90 分钟的半结构化面对面访谈。访谈进行了录音，并逐字转录。使用扎根理论的方法对转录本进行分析。这种归纳方法使分析人员能够识别与参与者对儿童自闭症诊断体验相关的关键主题。
自闭症诊断的过程反映了一段奥德赛，包括 3 个关键阶段：诊断前阶段，在此期间，“理解孩子的差异”是参与者体验的主要特征；诊断期间阶段，“诊断过程中的导航”表明系统障碍影响了 ASD 诊断的时间；以及诊断后阶段，当参与者经历“与服务的连接”时，个人努力在获得护理方面发挥着重要作用。
在这项研究中，我们强调了影响父母在孩子自闭症诊断之前、期间和之后体验的个体、社会和结构因素。我们的研究结果表明，需要在诊断奥德赛期间为自闭症患者及其家庭提供更一致和持续的支持，以及更好地反映与自闭症相关的经验和症状多样性的资源。
