A Quantitative and Qualitative Study of Twenty Autistic Individuals Over 50 Years of Age

Background:  Originally described as a disorder of childhood, evidence now demonstrates the lifelong nature of autism spectrum disorder (ASD).  Despite the increase of the general population over age 65, older adults with ASD remain a scarcely explored subpopulation. With the aging of the ASD population in western countries, increasing rate of diagnosis of ASD and burgeoning use of services by persons with ASD, the need to learn more about aging and autism is a high priority.  In this study we cast a broad net by conducting both a qualitative and quantitative descriptive study, in order to identify areas of focus for future studies of this population.

Objectives:  1) Explore the issue of ascertainment bias in finding older individuals with ASD, as this will undoubtedly influence the interpretation of any future studies.  (2) Examine the life stories, current and retrospective behavior, co-occuring medical and psychiatric problems, life circumstances and quality of life of older adults with ASD.

Methods: We surveyed over a wide range of individuals, families and agencies including -  hospitals, statewide advocacy organizations, specialty clinics, state residential facilities, general medical practices and a statewide autism registry, to identify 20 adults with ASD over 50 years of age. Informants and subjects were assessed on measures of autistic behavior; cognitive ability; medical/neurological and psychiatric problems; level of function; family and community supports and services; and quality of life. 

Results:  Twenty individuals over 50 years of age were identified from mailings to over 14,000 households and agencies in North Carolina.  Bias of ascertainment was apparent and linked to the ascertainment source e.g., severe intellectual impairment characterized those ascertained through residential facilities; medical problems were common in those ascertained through general hospital records. Major themes identified included (a) the impact of wide variation in lifelong family support; (b) early difficulties obtaining accurate diagnosis with a resultant negative impact; (c) high rates of treated psychiatric and behavioral problems; (d) difficulty finding appropriate residential environments; and (e) victimization.  More detailed quantitative analyses will be presented.

Conclusions:  The results of this descriptive survey suggest that future studies of this population will be affected by a significant bias of ascertainment as well as the likelihood that many older individuals with ASD, in the community, have been misdiagnosed with something other than ASD.  The high rate of significant behavioral/psychiatric problems suggest the urgent need for research on the nature and treatment of behavior problems in this rapidly expanding population of older adults with ASD, as well as the importance of developing policies to expand our capacity to care for these individuals.