Adapting a Parent Advocacy Program to Improve Transition for Youth With Autism

描述(由申请人提供)：在拟议的研究中，我们首先调整现有的家长倡导培训计划(志愿者倡导项目，或VAP)，以满足正在过渡到成年的患有自闭症谱系障碍(ASD)的青少年家庭的需求。在随机分配的等待名单对照设计中，我们分别进行了6个月和12个月的随访，然后调查了这个修订后的志愿者倡导项目-过渡(或VAP-T)的有效性。尽管患有自闭症的年轻人结局不佳，成人服务普遍难以获得，但帮助这些年轻人及其家人的以过渡为重点的干预措施很少是循证的。此外，大多数现有的方法要么对这些年轻人进行社会或其他技能培训，要么努力增加一个州或地区的成人残疾服务存量。在拟议的研究中，我们采取了补充的方法，调整和试点测试一种干预措施，以提高父母在过渡到成年期间为患有自闭症的儿子或女儿辩护的技能。我们提出了四个具体目标：(1)调整VAP以满足ASD过渡青年的需要，测试适应性干预(VAP-T)和研究设计的可行性和可接受性，以及VAP-T的保真度；(2)进行初步测试，以确定参与VAP-T是否与父母为子女辩护的能力、接受服务的能力和ASD青年结果的改善有关；(3)对治疗反应的主持人进行初步检查；以及(4)根据拟议研究的结果编制VAP-T手册。为了研究这些目标，在第一年，我们将把VAP改编成VAP-T，广泛咨询咨询委员会，咨询委员会由自闭症青年家庭、青年本身、自闭症专家和向成人过渡的专家以及自闭症和成人残疾服务组织组成。然后，我们将把干预措施提供给患有自闭症的年轻人的父母的试验组，并利用他们的反馈进行进一步的修改。在获奖的第二年和第三年，我们将进行一项小型随机对照试验，并与等待名单对照组一起收集 关于干预和研究设计的可行性、可接受性和保真度的数据。我们 将收集关于我们的宣传知识、技能和舒适度的主要结果的数据，以及关于自闭症青少年在干预后6个月和12个月的服务使用和结果的数据。有了这些试验数据，我们将进行初步的疗效测试，并收集初步数据，以帮助提议在多个地点进行更大规模的VAP-T随机对照试验。鉴于自闭症的高患病率，成人自闭症预后不良的优势，以及成人服务的可得性显著不同， 开发和测试一种可适用于各种成人支持环境的干预措施是至关重要的，也是非常重要的，可能会对干预措施和实践产生显著影响。

DESCRIPTION (provided by applicant): In the proposed research, we first adapt an existing parent advocacy training program (the Volunteer Advocacy Project, or VAP) to meet the needs of families of youth with autism spectrum disorders (ASD) who are transitioning to adulthood. In a randomly assigned, wait-list control design with 6- and 12-month follow-ups, we then investigate the efficacy of this revised Volunteer Advocacy Project-Transition (or VAP-T). Despite poor outcomes for young adults with ASD and the general inaccessibility of adult services, few transition-focused interventions to assist these young adults and their families are evidence-based. Moreover, most existing approaches either train these youth in social or other skills or endeavor to increase a state or locality's stock of adult disability services. In the proposed research, we adopt a complementary approach, adapting and pilot testing an intervention to increase parents' skills in advocating for their son or daughter with ASD during the transition to adulthood. We propose four Specific Aims: (1) To adapt the VAP to address the needs of transitioning youth with ASD, to test the feasibility and acceptability of the adapted intervention (VAP-T) and of the research design, as well as the fidelity of the VAP-T; (2) To conduct preliminary tests to determine whether participation in the VAP-T is associated with improvements in parents' ability to advocate for their offspring, in service receipt, and in outcomes of the youth with ASD; (3) To conduct preliminary examination of moderators of treatment response; and (4) To produce a VAP-T manual based on results from the proposed research. To investigate these Aims, during Year 1 we will adapt the VAP into the VAP-T, consulting extensively with an Advisory Board comprised of families of youth with ASD, youth themselves, experts in ASD and in the transition to adulthood, and autism and adult-disability service organizations. We will then deliver the intervention to a trial group of parents of young adults with ASD, and use their feedback for further revisions. During Years 2 and 3 of the award, we will conduct a small randomized-controlled trial with a wait-list control group to gather data on feasibility, acceptability, and fidelity of the intervention and of the research design. We will collect data on our primary outcomes of advocacy knowledge, skills, and comfort, as well as on service use and outcomes of the youth with ASD at 6-months and 12-months post-intervention. With this pilot data, we will conduct initial tests of efficacy, as well as gather preliminary data to aid in proposing a larger randomized- controlled trial of the VAP-T, to be delivered at multiple sites. Given the high prevalence of ASD, the preponderance of poor outcomes for adults with ASD, and the remarkable variability in the availability of adult services, developing and testing an intervention that is applicable across the array of adult support landscapes is of critical concern and highly significant, with potential for marked impact on intervention and practice.