Parenting Your Young Child with Autism: A Web-Based Tutorial

描述(由申请人提供)：自闭症是一种神经发育障碍，其特征是社交互惠、言语和非言语交流以及行为方面的缺陷。它是所有发育障碍中最普遍的，估计患病率为每150人中有1人。早期发现和干预已被证明可以改善长期结果，包括语言功能、认知/发展技能、社会和适应行为，防止因早期缺陷影响后来的功能而产生的一系列影响。从公共卫生的角度来看，早期干预也可能最终降低相当大的终生成本和服务系统需求。不幸的是，我们对有效干预战略的了解与这些资源的可获得性之间存在差距，部分原因是受过这些干预培训的专业人员严重短缺。弥合这一差距的一种方法是教父母如何在与孩子的日常互动中使用这些技术。学习与自闭症儿童互动的有效方式对于改善儿童在补救与自闭症相关的核心缺陷方面的长期结果以及减轻照顾者的压力都至关重要。最近开发的一个这样的项目(“加强互动”)为患有自闭症的3岁以下儿童的照顾者提供个性化的指导。该方案由12个疗程组成，具有改善互动和养育效果的双重目标，同时改善儿童的核心缺陷和长期结果。基于经验验证的技术，这些课程是独一无二的，因为临床医生会去孩子的家里实时观察问题行为，并在孩子身上模拟不同的教学策略，并在家长自己实施策略时对他们进行指导。虽然该方案非常成功，但由于缺乏训练有素的临床医生提供此类服务，它向有需要的人提供帮助的能力有限。提高该程序可访问性的一种方法是使用基于Web的技术。在目前的研究中，我们将为患有自闭症的幼儿的照顾者开发一个基于网络的互动教程，旨在a)教父母如何促进他们孩子在核心缺陷领域的发展，b)帮助父母了解并改进他们的孩子可能表现出的挑战性行为，以及c)通过更有效的互动来减少照顾者的压力。它将强调日常情况作为学习的机会，包括常见的家庭例行公事和社区活动，并包含在以研究为基础的干预环境中教授的技术的录像带插图(建模)。在第一阶段，将开发一个原型，其中包括教育/概览部分、关于核心学习原则的模块和用于弥补核心缺陷之一的模块(“改善沟通”)。该原型将通过阿尔法和贝塔测试进行可行性评估，并在20名父母中进行有效性评估。第二阶段将涉及制定处理所有核心缺陷的完整版本，并对该方法的效力进行正式验证研究。公共卫生相关性：自闭症的早期干预改善了长期结果，然而，很少有临床医生接受过这些干预的培训。这项研究将利用一个基于网络的教程，使父母能够在孩子的日常互动中直接对他们进行这些干预。网络接入使这种培训更容易获得，如果有效，将改善儿童的长期结果，减少照顾者的压力，从公共卫生的角度来看，可能最终减少与向自闭症患者及其家人提供自闭症护理相关的可观的终生成本和服务系统需求。

DESCRIPTION (provided by applicant): Autism is a neurodevelopmental disorder characterized by deficits in social reciprocity, verbal and nonverbal communication, and behavior. It is among the most prevalent of all developmental disabilities, with an estimated prevalence of 1 in 150. Early detection and intervention has been shown to improve long- term outcomes, including language functioning, cognitive/developmental skills, and social and adaptive behavior, preventing a cascade of effects that result from early deficits impacting later functioning. From a public health perspective, early intervention may also ultimately reduce the considerable lifetime cost and service system demands. Unfortunately, there is a gap between our knowledge of effective intervention strategies and the availability of these resources, due in part to a critical shortage of professionals trained in these interventions. One way to bridge this gap is to teach parents how to utilize these techniques in their daily interactions with their children. Learning effective ways of interacting with a child with autism is critical both for improving long term outcomes for the child in terms of remediation of the core deficits associated with the disorder, as well as reducing the stress on the caregiver. One such program recently developed ("Enhancing Interactions") provides individualized instruction to caregivers with children under 3 years old with autism. The program consists of 12 sessions and has the dual goals of improving interactions and parenting effectiveness while at the same time improving the core deficits and long term outcomes in the child. Based on empirically validated techniques, the sessions are unique in that the clinicians go the child's home to observe problematic behaviors in real time, and model "in vivo" different teaching strategies with the child and coach the parents as they implement the strategies themselves. While the program has been highly successful, its ability to provide help to those needing it is limited due to the lack of trained clinicians to provide such services. One way to increase the accessibility to this program is through the use of Web Based technologies. In the current study we will develop a web-based interactive tutorial for caregivers of young children with autism designed to a) teach parents how to promote their child's development in the core deficit areas, b) help parents understand and improve challenging behaviors their child may demonstrate, and c) reduce caregiver stress through more effective interactions. It will emphasize everyday situations as opportunities for learning, including common home routines and community activities and contain videotaped illustrations (modeling) of the techniques taught in research-based intervention settings. In phase I, a prototype will be developed containing the educational/overview section, a module on the core learning principles, and module for remediating one of the core deficits ("improving communication"). The prototype will be evaluated for feasibility by alpha and beta testing, and efficacy in a sample of 20 parents. Phase II will involve development of the complete version addressing all the core deficits and formal validation studies on the efficacy of the methodology. PUBLIC HEALTH RELEVANCE: Early intervention in autism improves long-term outcomes, however few clinicians are trained in these interventions. This study will utilize a web-based tutorial to empower parents to administer these interventions directly to their children during their daily interactions. Web access makes this training more widely accessible, and if effective, will improve the long-term outcomes for the child, reduce caregiver stress, and from a public health perspective, may ultimately reduce the considerable lifetime cost and service system demands associated with providing autism care to individuals with autism and their families.