Celtic Nations Autism Partnership

Ageing and autism is a frequent topic of posts, and interest, within the wider autism community.  Unfortunately many of the journals featuring articles that focus on ASD in older adults are not openly available, and a bit obscure.

This article was recommended.  It’s called ‘Toward Defining a Research Agenda’ , the main topic of a special article in the Journal of the American Geriatric Society (2011), written by Joseph Piven, MD, Peter Rabins, MD, and On behalf of the Autism-in-Older Adults Working Group.

This predominantly US centred article argues that ASDs are among the most common of the severe developmental disabilities, yet little is known about older adults with ASDs—in particular, how the disabilities and dependencies that result from ageing interact with those resulting from ASDs. The article outlines observations and recommendations of a multidisciplinary expert group convened in March 2010 to characterise gaps in knowledge regarding ASDs in older adults, and to help shape the direction of research.

 ’The aging of the population in western countries, the increasing rate of diagnosis of ASDs, and the burgeoning use of services for ASDs are converging to create a large,growing influx of older adults with ASDs that could impose tremendous humanistic and economic burdens on the healthcare system and society.  The article proposes that an understanding of the epidemiological, biological, psychological, and social aspects of ASDs in older adults is essential for preparing

to meet their needs, and sets out the following framework for a research agenda that could help improve the lives of older adults with ASDs and inform research and clinical practice involving younger individuals with ASDs. (J Am Geriatr Soc 2011).

The research framework proposed includes:

•  Develop diagnostic criteria and instruments for diagnosis and assessment of the needs of older adults with ASDs. Current diagnostic practice relies on early life history, which is less likely to be available in older adults suspected of having an ASD. Diagnostic criteria will therefore need to take into account adult manifestations of autistic symptoms and the specificity of adult symptom profiles for the diagnosis of an ASD. The development of reliable and valid diagnostic and assessment tools is a prerequisite for conducting descriptive studies of individual and convenience samples and epidemiological population-based samples. Based on recent findings9 suggesting stable rates of ASD across the life span, it seems likely that there exists a large population of older adults with ASD who have not been identified. No instruments are currently available to geriatricians for screening or diagnosis of this population.

• Conduct cross-sectional descriptive studies in adults of phenomenology, including current symptoms and behaviours, neuropsychiatric features, associated medical conditions, and descriptions of available service and support networks. These studies will be critical in elucidating the magnitude and specificity of problems and suggest potential interventions at individual (e.g., specific behavioural or medical strategies, the importance of screening for selected conditions) and societal (e.g.,new approaches to vocational training, development of skilled long term care facilities) levels.

•  Conduct longitudinal studies of life span trajectories (including prospective, cross-lagged, and retrospective designs) that will examine the progression of behavioural, neuropsychiatric, and medical changes over time and potential mechanisms for altering these adult trajectories and will generate insights into specific and nonspecific associated symptoms and conditions,hypotheses about possible underlying mechanisms, and needs for care and research.

• Conduct neurobiological studies that examine whether findings (e.g., those from genetic and imaging studies) in young individuals with ASDs are present in older persons with an ASD and that examine the interaction between ageing, associated disease, and autistic symptoms in the brain of autistic individuals as they develop in older age.

•  Conduct studies of psychosocial, behavioural, educational, and pharmacological interventions in older individuals with an ASD, to determine whether results seen in younger affected individuals generalize to the older population. In addition, studies are need to develop new models of care (including long-term care) based on the specific needs of older adults with ASD

•  Develop mechanisms to support training in research on aging in ASDs. Research on aging and ASDs is almost nonexistent. Mechanisms that support clinical and research training must be developed to attract young clinicians and researchers, from a range of related disciplines to this new discipline of ASDs and aging.