Abstract
The health, social, educational aspects as well as the research in treatment and diagnosis of Autistic Spectrum Disorder (ASD) have largely focused on the younger population. In contrast, very little is known about ageing with ASD. In order to address both the current knowledge about the ageing in ASD and the real needs of the ageing ASD subjects, we conducted a survey of 45 individuals who were either formal or informal carers of people with ASD or themselves had the diagnosis. Participants identified long-term management, diagnosis and awareness regarding ageing in ASD to be major topics for further work and investment rather than aetiology and treatment. They also identified two major themes for action: person-centred care (to include accurate diagnosis of ASD irrespective of age) and long-term support and care in community.
Highlights
Autistic spectrum disorder (ASD) is one of the most widely studied developmental disabilities
None of the participants felt that aetiology is an important issue in ASD research/management, whereas only 4 of the participants (9%) placed treatment as a priority (Table 1)
The majority of the participants in our survey felt that long-term management, diagnosis and awareness regarding ageing in ASD are major topics that need further work and investment rather than those pursued for the younger ASD population e.g. aetiology and treatment or trajectories of development over the ASD lifespan and identifying factors that may influence the prognosis for people with ASD in adulthood, as suggested by a recent expert review (Howlin and Moss, 2012)
Summary
Autistic spectrum disorder (ASD) is one of the most widely studied developmental disabilities. It is considered one of the most severe childhood neuropsychiatric disorders. Research into both the treatment and diagnosis of ASD has largely focused on the younger population, with the majority of published studies conducted on children and adolescents (reviewed in Mukaetova-Ladinska et al, 2012). The recent review papers on ageing in ASD (Povey et al, 2011, Mukaetova-Ladinska et al, 2012, Piven et al, 2012, Happe and Charlton, 2012, Smith, 2012, Wright et al, 2013) have all highlighted the number of unknowns in respect to epidemiological, biological, psychological and social aspects of older adults with this syndrome. Mukaetova-Ladinska and Ian Stuart-Hamilton / American Journal of Autism (2016) Vol 2 No 1 pp. 1-11 adults with ASD (Stuart-Hamilton et al, 2010), as well as a small number of published case reports on diagnosing ASD for the first time in older adults and changes in their cognitive abilities, in terms of problems thinking, loss of memory, decreased attention span, and difficulty with word-finding (James et al, 2006)
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