Women with Autism Spectrum Disorders during Adolescence and Adulthood: Unique and Common Vulnerabilities

青春期和成年期患有自闭症谱系障碍的女性：独特和常见的脆弱性

• 批准号: 9293774
• 负责人: Leann Smith DaWalt
• 金额: $ 9.22万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-02-03 至 2019-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9293774
• 关键词: Academic achievement; Achievement; Activities of Daily Living; Adolescence; Adolescent; Adult; Affect; Age; Anxiety; Area; Autistic Disorder; Caregivers; Clinic; Data; Data Analyses; Data Reporting; Data Set; Databases; Dementia; Diabetes Mellitus; Diagnosis; Discrimination; Electronic Health Record; Face; Female; Future Teacher; General Population; Group Practice; Health; Healthcare; Hour; Individual; Intervention; Knowledge; Longevity; Measures; Medical Records; Mental Depression; Mental Health; Mental Health Services; Methods; Occupations; Outcome; Parents; Patient Self-Report; Phenotype; Prevalence; Privatization; Psyche structure; Psychotic Disorders; Readiness; Reporting; Research; Research Personnel; Risk; Sampling; Schools; Secondary Schools; Self Determination; Services; Sex Characteristics; Students; Symptoms; System; Testing; Time; Unemployment; United States; Woman; Youth; autism spectrum disorder; base; comparison group; cost; disability; evidence base; experience; health care service utilization; high risk; high risk men; high school; informant; male; men; middle age; peer victimization; physical conditioning; psychosocial; service utilization; sex; social; social engagement; social exclusion; young adult

PROJECT SUMMARY With the rising prevalence of autism spectrum disorders (ASD), increasing numbers of youth with ASD exit high school with each passing year. Adolescence and adulthood are times of significant risk for those with ASD; many face challenges in academic achievement, vocational stability, social connectedness, and mental health. These wide-ranging needs often result in significant public costs. Many of the vulnerabilities faced by adolescents and adults with ASD are also shared by women in the general population; thus, women with ASD might be doubly-vulnerable, by virtue of having an ASD and being a woman. Yet, the vast majority of studies on outcomes among adolescents and adults with ASD use samples that are primarily male, and thus the unique needs of women with ASD are mostly unknown. Further, the extant research on sex differences in ASD is fragmented, with no over-arching framework to guide integration of findings, and with little knowledge about potential psychosocial mechanisms responsible for sex differences that emerge. The objective of this research is to conduct secondary data analysis on three existing datasets, to develop a new evidence base on the academic, self-determination, vocational, social, health, mental health, and service utilization outcomes of adolescent and adult women with ASD. We will examine sex differences in these outcomes, allowing us to identify areas where women are uniquely vulnerable as well as areas in which vulnerabilities are shared with men with ASD. We propose three tightly-integrated Specific Aims: (1) We will use the Center on Secondary Education for Students with Autism Spectrum Disorders (CSESA) database of 546 well-characterized adolescents with ASD (20% female) to examine sex differences in school achievement, self-determination, vocational readiness, social participation, mental health conditions, and service use; (2) Using data to be collected in 2016/2017, we will examine an Interactive Autism Network (IAN) national sample of adults with ASD (expected n ≥ 260, 65% female) and caregivers of adults with ASD (expected n ≥ 150, 25% females) to test for sex differences in post-secondary educational and vocational experiences, service receipt, physical and mental health conditions, social participation, and discrimination experiences; and (3) We will use electronic health records from the Marshfield Clinic – one of the largest, private, multispecialty group practices in the United States – to examine sex differences in physical and mental health conditions and healthcare utilization for adults with an autism diagnosis as identified in their medical records (approximate n = 1,000, ~25% female). For both the CSESA and Marshfield datasets, we will examine if sex differences are more apparent over time or with increasing age. For all datasets, possible psychosocial mechanisms of sex differences will be explored (e.g., discrimination, health care utilization). Completion of the Aims will result in an evidence-base to guide future research and interventions focused on better serving women with ASD during adolescence and adulthood.

项目总结 随着自闭症谱系障碍(ASD)患病率的上升，越来越多的青少年患有自闭症谱系障碍 高中一年比一年好。青春期和成年期是那些患有艾滋病的人的重大风险时期 许多人在学业成就、职业稳定性、社会联系和精神方面面临挑战 健康。这些广泛的需求往往会导致巨大的公共成本。面临的许多漏洞 患有自闭症的青少年和成年人也是普通人群中的女性；因此，患有自闭症的妇女 由于患有自闭症和身为女性，可能会双重脆弱。然而，绝大多数的研究 关于青少年和成人ASD患者结局的研究使用的样本主要是男性，因此 患有ASD的女性的独特需求大多是未知的。此外，现有关于ASD性别差异的研究 是支离破碎的，没有全面的框架来指导调查结果的整合，而且几乎不了解 造成性别差异的潜在心理社会机制。这项研究的目的是 是对现有的三个数据集进行二次数据分析，以开发新的证据基础 学术、自决、职业、社会、健康、心理健康和服务利用成果 患有自闭症的青少年和成年女性。我们将检查这些结果中的性别差异，使我们能够 确定女性唯一易受伤害的领域，以及与女性共同易受伤害的领域 患有自闭症的男性。我们提出了三个紧密结合的具体目标：(1)我们将利用中学 自闭症谱系障碍学生教育(CSESA)数据库546个特点良好 对患有自闭症的青少年(20%为女性)在学业成绩、自我决定、 职业准备、社会参与、心理健康状况和服务使用；(2)使用数据 收集于2016/2017年，我们将检查互动自闭症网络(IAN)的成年人样本 自闭症(预计n≥260，女性65%)和成人自闭症照顾者(预计n≥150，女性25%)至 大专教育和职业经历的性别差异测试，服务收据，体检 和心理健康状况、社会参与和歧视经历；以及(3)我们将使用 来自马什菲尔德诊所的电子健康记录--这是最大的、私人的、多专科的团体实践之一 在美国--检查身心健康状况和医疗保健方面的性别差异 用于在其医疗记录中确定为自闭症诊断的成年人(约n=1,000， 约25%为女性)。对于CSESA和Marshfield数据集，我们将检查性别差异是否更大 随着时间的推移或随着年龄的增长而明显。对于所有数据集，性行为可能的心理社会机制 将探讨不同之处(例如，歧视、保健利用)。这些目标的完成将导致 指导未来研究和干预的证据基础，重点放在更好地为自闭症妇女提供服务 青春期和成年期。