Autism in the second half of the lifespan: Behavior, daily living, service needs

后半生的自闭症：行为、日常生活、服务需求

• 批准号: 7934621
• 负责人: Ruth Carper
• 金额: $ 26.38万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2012-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7934621
• 关键词: Acceleration; Adult; Adult Children; Affect; Age; Age-Years; Aging; Alzheimer' s Disease; Am 80; Area; Assisted Living Facilities; Ataxia; Autistic Disorder; Autopsy; Behavior; Biological; Brain imaging; Caregivers; Caring; Characteristics; Child; Cognition; Cognitive; Demographic Factors; Disease; Down Syndrome; Elderly; Exercise; FXTAS; Family; Fragile X Premutation; Fragile X Syndrome; Frequencies; Future; Generations; Genetic; Goals; Health; Immune; Impaired cognition; Individual; Intention; Knowledge; Life; Life Style; Long-Term Care; Longevity; Measures; Medical; Motor; Neurodevelopmental Disorder; Neurologic; Parents; Patients; Performance; Play; Population; Problem behavior; Process; Psyche structure; Quality of life; Reporting; Rest Tremor; Role; Self Care; Services; Support System; Surveys; Symptoms; Syndrome; Testing; Tissues; age effect; autism spectrum disorder; developmental disease; executive function; expectation; experience; in vivo; male; meetings; men; middle age; normal aging; physical conditioning; public health relevance; skills; social; social skills; white matter damage

DESCRIPTION (provided by applicant): Autism is a lifetime disorder, but surprisingly little is known about the effects it has on the individual's abilities, needs, and experiences as he or she reaches and continues through adulthood. The first descriptions of autism spectrum disorders (ASDs) appeared in 1943 in Kanner's report and in 1944 in Asperger's report. Even the oldest of Kanner's first patients, the first generation of those with known ASDs, would not yet be 80 years of age. Hence, it is only in recent years that the unique characteristics of aging in this population can be ob- served. Those with autism will not be immune to the normal effects of aging -- declining cognitive and self-care abilities and declining physical health. But unfortunately, even while the population of people with ASDs advances in age and rapidly increases in numbers, our knowledge of late life effects remain extremely limited. We do know that most adults with autism show some degree of cognitive impairment even in adulthood, and a large proportion requires some form of family or public care throughout their lifetimes. But there is also evidence of a possible acceleration of cognitive and neurological decline in adults. This raises a number of important questions: Do cognition and daily living skills change at the same rate in older adults with ASD as in typical adults? If not, are specific functions particularly susceptible? Do new neurological deficits arise in later age? Are appropriate long-term care services available and accessible to affected families? Are there areas of additional need? Even these most fundamental questions have not yet been investigated. As a first step toward identifying and understanding the effects of aging in ASD, we propose to examine individuals in middle and later-age (30-70 years) in order to: (1) Characterize current living situations, support needs and available support systems for adults with ASD and the influence of demographic factors on these variables; (2) Determine the effect of age on cognitive and motor abilities in adults with ASD in comparison to normal control adults; (3) Identify possible protective factors or activities that may promote successful aging in ASD. We will achieve these goals by surveying subjects and their caregivers to determine individual level of independence, daily living skills, social skills, frequency of problem behaviors, and overall quality of life. Extensive information will be collected with regard to service usage and support needs, and direct testing will be used to determine cognitive and motor functions and current autism symptomology. Examination of middle and late life in ASD is not only important for people with autism but is urgent for their parents and families. At an age when many parents move in with their adult children to receive increased care, parents of people with ASDs are often still playing the role of care-giver. They must make new care plans for when they are gone or are no longer able to care for their adult children. The proposed project will help to determine the effects of aging on the individual with autism and, in turn, may help to predict future support needs for this population as they age, and as they transition from family support to public support. PUBLIC HEALTH RELEVANCE: Almost nothing is known about the effects of middle and late-life aging in autism, and there is a real possibility that the detrimental effects typical of normal aging may be accelerated in these individuals. An understanding of cognitive and functional aging in adults with autism, a special-needs population, is vital in order to predict the long-term impact on individuals, their families, and on our health support systems. The particular support needs of these individuals need to be characterized to provide families with the information they need in order to prepare for the future.

描述（由申请人提供）：自闭症是一种终身障碍，但令人惊讶的是，人们对它对个人能力，需求和经历的影响知之甚少，因为他或她达到并持续到成年。自闭症谱系障碍（ASD）的第一个描述出现在1943年的Kanner报告和1944年的Bogger报告中。即使是Kanner的第一批患者中年龄最大的，也就是第一代患有ASD的人，也还不到80岁。因此，只是在最近几年才能观察到这一人口老龄化的独特特征。那些自闭症患者将无法免受衰老的正常影响-认知和自我护理能力下降以及身体健康状况下降。但不幸的是，即使自闭症患者的年龄在增长，人数在迅速增加，我们对晚年影响的了解仍然非常有限。我们确实知道，大多数患有自闭症的成年人即使在成年期也会表现出一定程度的认知障碍，而且很大一部分人一生中都需要某种形式的家庭或公共护理。但也有证据表明，成年人的认知能力和神经功能可能会加速下降。 这提出了一些重要的问题：患有ASD的老年人的认知和日常生活技能的变化率与典型成年人相同吗？如果不是，是否有特定的功能特别容易受到影响？新的神经功能缺损会在以后出现吗？受影响的家庭是否可以获得适当的长期护理服务？是否有额外的需求？即使是这些最基本的问题也还没有得到研究。作为识别和理解ASD中衰老影响的第一步，我们建议检查中年和老年个体（30-70岁），以便：（1）描述ASD成年人目前的生活状况，支持需求和可用的支持系统以及人口因素对这些变量的影响;（2）确定年龄对ASD成年人与正常对照成年人相比的认知和运动能力的影响;（3）确定可能促进ASD成功老化的可能保护因素或活动。我们将通过调查受试者及其照顾者来确定个人的独立水平、日常生活技能、社交技能、问题行为的频率和整体生活质量，从而实现这些目标。将收集有关服务使用和支持需求的广泛信息，并将使用直接测试来确定认知和运动功能以及当前的自闭症谱系学。 ASD中晚期生活的检查不仅对自闭症患者很重要，而且对他们的父母和家庭也很重要。在这个年龄，许多父母与他们的成年子女一起接受更多的照顾，自闭症患者的父母往往仍然扮演着照顾者的角色。他们必须为他们离开或不再能够照顾成年子女制定新的照顾计划。拟议的项目将有助于确定老龄化对自闭症患者的影响，反过来，可能有助于预测未来的支持需求，因为他们的年龄，以及他们从家庭支持过渡到公共支持。 公共卫生关系：关于中年和晚年衰老对自闭症的影响几乎一无所知，并且有一种真实的可能性，即正常衰老的典型有害影响可能在这些个体中加速。了解成年自闭症患者的认知和功能老化，这是一个特殊需要的人群，对于预测对个人，他们的家庭以及我们的健康支持系统的长期影响至关重要。需要确定这些人的特殊支助需要，以便向家庭提供他们为未来做好准备所需的信息。