Transitioning to Adulthood: A Prospective Longitudinal Study

过渡到成年：一项前瞻性纵向研究

• 批准号: 9764160
• 负责人: Catherine Lord
• 金额: $ 63.37万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9764160
• 关键词: Abate; Adolescence; Adult; Affect; Age; Behavior; Behavioral; Biological; Birth Order; Caregiver well-being; Caregivers; Caring; Characteristics; Child; Childhood; Clinical; Collection; Comorbidity; Data; Data Collection; Development; Developmental Delay Disorders; Diagnosis; Diagnostic; Dimensions; Disease; Emotional; Employment; Family; Genetic; Genotype; Goals; Hospitalization; Individual; Intellectual functioning disability; Knowledge; Language; Lead; Literature; Longevity; Longitudinal Studies; Longitudinal prospective study; Medical; Mental Health; Mosses; Outcome; Outcome Study; Parents; Participant; Personal Satisfaction; Phenotype; Population; Predictive Factor; Problem behavior; Prospective Studies; Quality of life; Recording of previous events; Rehabilitation therapy; Research; Resources; Risk Factors; Route; Sampling; School Health Services; Scientist; Seizures; Services; Severities; Siblings; Social support; Special Education; Symptoms; System; Time; Work; autism spectrum disorder; autistic children; clinical Diagnosis; clinical care; clinical phenotype; contextual factors; coping; early childhood; functional outcomes; improved; interest; negative affect; outcome prediction; pervasive developmental disorder not otherwise specified; proband; prospective; psychiatric symptom; public health relevance; recruit; repetitive behavior; response; service utilization; skills; social; social organization; young adult

 DESCRIPTION (provided by applicant): Though our knowledge about autism spectrum disorders (ASD) has grown considerably over the last two decades, we know little about the clinical phenotype in adulthood. Recent studies suggest that anywhere from 10-20% of those diagnosed with ASD obtain favorable outcomes in young adulthood. At the same time, a growing body of literature suggests that for many, outcomes worsen during the transition from school-based services to adulthood. The primary aim of this project is to accurately describe ASD in adulthood as well as the transition to adulthood and to identify mechanisms that contribute to positive and negative outcomes in individuals with ASD and their families. The transition to adulthood will be examined in a well-described longitudinal sample of children referred for possible ASD at age two, and a group of non-spectrum developmentally delayed controls most of whom have been followed for two decades. The current study will follow the probands as they transition to adulthood; families will receive annual assessment packets over the next 5 years and receive two face-to-face assessments 3 years apart. The longevity of this study and the families' continued participation will aid our recruitment efforts and should allow us to set up a framework for collection of biological samples from this extraordinary group of families which would then be made available to interested scientists. Findings will inform best practices for the care and support of adults with ASD and ultimately lead to improvements in the quality of life for individuals affected by ASD and their families.

 描述(由申请人提供)：尽管我们对自闭症谱系障碍(ASD)的了解在过去20年中有了相当大的增长，但我们对成年后的临床表型知之甚少。最近的研究表明，在被诊断为ASD的人中，任何地方都有10%-20%的人在年轻时获得了良好的结果。与此同时，越来越多的文献表明，对许多人来说，从以学校为基础的服务过渡到成年期间，结果会变得更糟。该项目的主要目的是准确描述成年期的自闭症以及向成年期的过渡，并确定有助于自闭症患者及其家人产生积极和消极结果的机制。向成年的过渡将在一个描述良好的纵向样本中进行检查，这些样本包括两岁时可能患有自闭症的儿童，以及一组非谱系发育迟缓的对照组，其中大多数人已经被跟踪了20年。目前的研究将跟踪先证者向成年的过渡；家庭将在未来5年内收到年度评估资料包，并接受相隔3年的两次面对面评估。这项研究的持续时间和家庭的持续参与将有助于我们的招募工作，并应使我们能够建立一个框架，从这一特殊的家庭群体中收集生物样本，然后向感兴趣的科学家提供。调查结果将为护理和支持成人自闭症患者提供最佳做法，并最终改善受自闭症影响的个人及其家人的生活质量。

项目成果

The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond.

• DOI: 10.1007/s10803-021-04904-1
• 发表时间: 2021-12
• 期刊: Journal of autism and developmental disorders
• 影响因子: 3.9
• 作者: Rosen NE;Lord C;Volkmar FR
• 通讯作者: Volkmar FR

SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research.

• DOI: 10.1016/j.neuron.2018.01.015
• 发表时间: 2018-02-07
• 期刊: Neuron
• 影响因子: 16.2
• 作者: SPARK Consortium. Electronic address: [e-mail];SPARK Consortium
• 通讯作者: SPARK Consortium

Utility of the Autism Diagnostic Observation Schedule and the Brief Observation of Social and Communication Change for Measuring Outcomes for a Parent-Mediated Early Autism Intervention.

• DOI: 10.1002/aur.2449
• 发表时间: 2021-03
• 期刊: Autism research : official journal of the International Society for Autism Research
• 作者: Carruthers S;Charman T;El Hawi N;Kim YA;Randle R;Lord C;Pickles A;PACT Consortium
• 通讯作者: PACT Consortium

Taking Sleep Difficulties Seriously in Children With Neurodevelopmental Disorders and ASD.

认真对待患有神经发育障碍和自闭症谱系障碍的儿童的睡眠困难。

• DOI: 10.1542/peds.2018-2629
• 发表时间: 2019
• 期刊: Pediatrics
• 影响因子: 8
• 作者: Lord,Catherine

Damaging de novo mutations diminish motor skills in children on the autism spectrum.

• DOI: 10.1073/pnas.1715427115
• 发表时间: 2018-02-20
• 期刊: Proceedings of the National Academy of Sciences of the United States of America
• 影响因子: 11.1
• 作者: Buja A;Volfovsky N;Krieger AM;Lord C;Lash AE;Wigler M;Iossifov I
• 通讯作者: Iossifov I