Understanding the Delay in the Diagnosis of Autism

描述(由申请者提供)：NIMH导师研究科学家职业发展(K01)奖的申请寻求支持，以开发一个与了解自闭症儿童筛查、诊断和进入治疗的途径和过程相关的研究计划。作为教育计划的一部分，PI将：1)增加他对自闭症的陈述、诊断和治疗的了解；2)增加他对自闭症儿童服务提供的不同系统的知识；3)通过促进与自闭症儿童的家庭和与他们接触的专业人员的互动，了解有助于专业人员和家庭理解自闭症的认识论；4)提高他在相关领域的知识，如神经心理学、决策和沟通；5)获得更多的研究技能，以收集和分析有关复杂、多层面问题的原始数据；以及6)获得与制定干预措施相关的技能。 一项以联邦政府资助的流行率研究为基础的三阶段研究被提议作为职业发展奖的一部分。在第一阶段，将使用医疗和学校记录来识别患有自闭症的儿童。来自来源的图表审查的信息将被用来确定与自闭症儿童被诊断的年龄相关的因素。第二阶段将根据第一阶段中发现的与诊断年龄有关的因素对家庭进行抽样。通过半结构化访谈，这些家庭将被要求描述他们与孩子自闭症相关的经历，是什么引发了他们的担忧，以及与筛查、诊断和治疗相关的经历。在第一阶段和第二阶段开发的模型和方法将为第三阶段的数据收集工作提供信息。第三阶段将招募孩子最近被筛查为自闭症阳性的家庭。定量和定性数据都将从将在孩子接受筛查时接受采访的家庭中收集。随后被诊断为自闭症的儿童的父母将在那时再次接受采访，也是在12个月后。将收集有关压力、支持来源以及他们是否和如何参与治疗的决定的数据。除了作为第三阶段使用的方法和工具的试点之外，第一阶段和第二阶段还将帮助PI发展与混合方法研究相关的技能，这些技能将应用于预期的数据收集、分析和解释。 预计作为这项研究的结果，将开发出干预措施，降低自闭症儿童接受诊断和接受治疗的年龄。此外，这项研究的结果可能有助于我们了解影响儿童其他精神和发育障碍的早期和适当诊断的因素，从而制定更广泛的干预措施，以加快适当的诊断。

DESCRIPTION (provided by applicant): This application for an NIMH Mentored Research Scientist Career Development (K01) award seeks support to develop a program of research related to understanding the pathways and processes by which children with autism are screened, diagnosed and enter treatment. As part of the education plan, the PI will: 1) Increase his understanding of the presentation, diagnosis of and treatments for autism; 2) Increase his knowledge of different systems through which services for children with autism are provided; 3) Learn about the epistemologies that informs professionals' and families' understanding of autism by promoting interaction with families of children with autism and the professionals who come into contact with them; 4) Improve his knowledge of related fields such as neuropsychology, decision-making and communication; 5) Gain additional research skills to collect and analyze primary data about complex, multilayered issues; and 6) Acquire the skills associated with the development of interventions. A three-phase study that builds upon a federally funded prevalence study is proposed as part of this career development award. In Phase I, children with autism will be identified using medical and school records. Information from chart reviews of sources will be used to identify factors associated with the age at which children with autism are diagnosed. Phase II will sample families based on factors found in Phase I to be associated with age of diagnosis. Through semi-structured interviews, these families will be asked to describe their experiences related to their children's autism, what precipitated their concerns, and experiences related to getting screened, diagnosed and treated. Models and methods developed in Phases I and II will inform data collection efforts in Phase III. Phase III will enroll families whose children have recently screened positive for autism. Both quantitative and qualitative data will be collected from families who will be interviewed near the time their child is screened. Parents of children who are subsequently diagnosed with autism will be interviewed again at that time, and also 12 months later. Data will be gathered on stress, sources of support, and their decisions about whether and how to engage in treatment. In addition to acting as a pilot for the methods and instruments used in Phase III, Phases I and II will help the PI develop skills associated with mixed methods studies that will be applied to prospective data collection, analysis and interpretation. It is anticipated that as a result of this research, interventions will be developed that decrease the age at which children with autism receive the diagnosis and enter treatment. In addition, the results from this study may inform our understanding of factors affecting the early and appropriate diagnosis of other psychiatric and developmental disorders of childhood, leading to the development of broader interventions to expedite appropriate diagnosis.