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.

项目概要 随着自闭症谱系障碍 (ASD) 患病率的上升，越来越多患有 ASD 的青少年退出 高中一年比一年过去。对于患有此类疾病的人来说，青春期和成年期是面临重大风险的时期 自闭症谱系障碍；许多人在学业成绩、职业稳定性、社会联系和心理方面面临挑战 健康。这些广泛的需求往往会导致巨大的公共成本。所面临的许多漏洞 一般人群中的女性也患有自闭症谱系障碍 (ASD) 青少年和成人；因此，患有 ASD 的女性 由于患有自闭症谱系障碍（ASD）并且身为女性，她可能会受到双重伤害。然而，绝大多数研究 关于患有 ASD 的青少年和成人的结果使用的样本主要是男性，因此 患有自闭症谱系障碍 (ASD) 的女性的独特需求大多未知。此外，现有关于 ASD 性别差异的研究 支离破碎，没有总体框架来指导整合研究结果，而且对相关知识知之甚少 造成性别差异的潜在心理社会机制。本研究的目的 是对三个现有数据集进行二次数据分析，以开发一个新的证据基础 学术、自决、职业、社会、健康、心理健康和服务利用结果 患有 ASD 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 确定妇女特别脆弱的领域以及与其他人共同脆弱的领域 患有 ASD 的男性。我们提出三个紧密结合的具体目标： (1) 我们将利用中学中心 自闭症谱系障碍学生教育 (CSESA) 数据库包含 546 个特征明确的学生 患有自闭症谱系障碍 (ASD) 的青少年（20% 为女性）检查学校成绩、自决权、 职业准备、社会参与、心理健康状况和服务使用； （2）利用数据 我们将检查 2016/2017 年收集的互动自闭症网络 (IAN) 全国成年人样本 ASD（预计 n ≥ 260，65% 女性）和 ASD 成人的照顾者（预计 n ≥ 150，25% 女性） 测试高等教育和职业经历、服务收据、身体素质方面的性别差异 心理健康状况、社会参与和歧视经历； (3) 我们将使用 马什菲尔德诊所 (Marshfield Clinic) 的电子健康记录——最大的私人多专业团体诊所之一 在美国——检查身心健康状况和医疗保健方面的性别差异 医疗记录中确定的患有自闭症诊断的成年人的利用（大约 n = 1,000， ~25% 女性）。对于 CSESA 和 Marshfield 数据集，我们将检查性别差异是否更大 随着时间的推移或年龄的增长而明显。对于所有数据集，可能的性心理社会机制 将探讨差异（例如歧视、医疗保健利用）。目标的完成将导致 指导未来研究和干预措施的证据基础，重点是更好地为患有自闭症谱系障碍的妇女提供服务 青春期和成年期。