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.
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.
