University of Southern California, Los Angeles, CA 90089, USA.
Soc Sci Med. 2013 Oct;94:106-14. doi: 10.1016/j.socscimed.2013.06.034. Epub 2013 Jul 5.
'Wandering' and 'elopement' have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of 'wandering' and 'elopement' reveals a complex intersection of larger issues encountered by families of children with autism. To consider these issues, this article examines 'wandering' and 'elopement' from the perspectives of African American mothers of children with autism, an underrepresented group in autism research. We consider how the mothers experience these behaviors and the response to these behaviors by professionals, such as service coordinators and law enforcement personnel working within various jurisdictions that become involved with the problem. We analyze the mothers' narratives about 'wandering' and 'elopement' drawn from ethnographic interviews that were collected between October 1, 2009 and August 31, 2012. These interviews were part of a larger project on disparities in autism diagnosis and services that followed a cohort of 25 four to ten-year old children. Drawing on narrative, phenomenological and interpretive traditions, we trace the mothers' developing understandings of 'wandering' and 'elopement' over time, and show how these understandings become elaborated and transformed. This article provides a nuanced, moment-to-moment and longitudinal picture of the mothers' experiences of 'wandering' and 'elopement' that enriches the cross-sectional view of large-scale surveys about the problem and contributes unique insights at the family and community levels. Implications for professional awareness, clinical practice and service provision are also suggested.
“走失”和“离家出走”在自闭症中较为常见,影响了一半的四到十岁确诊儿童,但即使在事后,家属也很少从医生那里得到建议。家庭观点在文献、公共卫生和政策辩论中都被忽视了,这些辩论涉及如何以及何时应对这一问题。“走失”和“离家出走”的问题揭示了自闭症儿童家庭所面临的一系列复杂问题的交叉点。为了考虑这些问题,本文从自闭症儿童的非裔美国母亲的角度来考察“走失”和“离家出走”的问题,这是非自闭症研究中代表性不足的群体。我们考虑了母亲们是如何体验这些行为的,以及专业人员(如服务协调员和执法人员)对这些行为的反应,他们在各种司法管辖区内工作,涉及到这个问题。我们分析了母亲们关于“走失”和“离家出走”的叙述,这些叙述来自于 2009 年 10 月 1 日至 2012 年 8 月 31 日期间收集的民族志访谈。这些访谈是一个关于自闭症诊断和服务差异的更大项目的一部分,该项目跟踪了一个由 25 名四到十岁儿童组成的队列。本文借鉴叙事、现象学和解释学传统,追溯了母亲们随着时间的推移对“走失”和“离家出走”的理解,展示了这些理解是如何得到阐述和改变的。本文提供了一个细致入微、时刻变化和纵向的母亲们体验“走失”和“离家出走”的画面,丰富了关于这个问题的大规模调查的横断面视图,并在家庭和社区层面上提供了独特的见解。本文还提出了对专业意识、临床实践和服务提供的启示。