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）：自闭症是一种终生障碍，但令人惊讶的是，它对他或她到达并继续贯穿成年时对个人能力，需求和经验的影响知之甚少。自闭症谱系障碍（ASD）的第一批描述于1943年出现在坎纳（Kanner）的报告中，并于1944年在阿斯伯格（Asperger）的报告中出现。即使是坎纳（Kanner）最古老的患者，也是已知ASD的第一代患者，尚未年满80岁。因此，直到近年来，该人群中衰老的独特特征才能得到处理。那些自闭症的人将无法免疫衰老的正常影响 - 认知能力和自我保健能力下降以及身体健康的下降。但是不幸的是，即使有ASD的人口年龄的发展并迅速增加，我们对后期生活影响的了解仍然极为有限。我们确实知道，大多数自闭症成年人即使在成年期也会表现出一定程度的认知障碍，而且很大一部分需要一生的家庭或公共护理。但是也有证据表明，成人认知和神经系统下降可能会加速。 这提出了许多重要的问题：在与典型成年人的ASD老年人中，认知和日常生活能力是否以相同的速度变化？如果没有，特定功能是否特别容易受到影响？新的神经系统缺陷会在以后出现吗？受影响的家庭是否可以使用适当的长期护理服务？还有其他需要的领域吗？即使是这些最根本的问题，尚未得到调查。作为确定和理解ASD衰老影响的第一步，我们建议检查中年和后期（30 - 70年）的个人，以表征：（1）表征当前的生活状况，支持ASD的成年人以及人口统计学因素对这些变量的影响； （2）与正常对照成年人相比，确定年龄对ASD成人认知和运动能力的影响； （3）确定可能促进ASD成功衰老的可能的保护因素或活动。我们将通过调查受试者及其护理人员来确定个人独立水平，日常生活技能，社交技能，问题行为的频率以及整体生活质量来实现这些目标。将收集有关服务使用和支持需求的广泛信息，直接测试将用于确定认知功能和运动功能以及当前的自闭症症状。 检查ASD中的中后期生活不仅对自闭症患者很重要，而且对父母和家人来说是迫切的。在许多父母与成年子女一起接受更多护理的时代，患有ASD的人的父母通常仍在扮演护理人员的角色。他们必须在离开时制定新的护理计划，或者不再能够照顾成年子女。拟议的项目将有助于确定衰老对自闭症患者的影响，反过来可能有助于预测该人群随着年龄的增长的未来支持需求，以及他们从家庭支持过渡到公共支持。 公共卫生相关性：几乎一无所知，对自闭症中的中年和后期衰老的影响，实际上有可能在这些人加速正常衰老的典型效果。为了预测对个人，家庭和我们的健康支持系统的长期影响，对自闭症成年人的认知和功能衰老的理解至关重要。这些人的特殊支持需求需要被表征，以便为家庭提供所需的信息，以便为未来做准备。