Autism and Ageing
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230 Clinical practice Autism and ageing: issues for the future Recognising the needs of autistic adults is now an expectation enshrined in law, but little attention has been paid to the issues affecting older people with the condition. What is certain is that a significant challenge remains to ensure that adults with autism enjoy fulfilling and productive lives as they age. Carol Povey* Director of the Centre for Autism, National Autistic Society, 393 City Road, London EC1V 1NG Richard Mills Director of Research, National Autistic Society, 393 City Road, London EC1V 1NG Dr Gina Gomez de la Cuesta Action Research Leader, National Autistic Society, 393 City Road, London EC1V 1NG *email [email protected] In October 2009, the Autism Act 1940s by Leo Kanner,4 it was not others, or may wish to interact but (in England) was passed, which put until 1975 that the concept of struggle in their understanding an expectation on local authorities autism as a spectrum disorder of the usual social cues and to recognise the needs of adults was described by Lorna Wing behaviour. This also affects their with autism. This landmark and her colleague Judith Gould. ability to communicate with legislation resulted in Fulfilling Their work recognised that others and to make sense of the and rewarding lives. The strategy autism affects each person world around them, particularly for adults with autism in England.1 differently, and that though all the context of behaviours, This strategy describes a vision people with autism have defined motivations and the inner where all adults with autism are characteristics necessary for thoughts of other people. Their able to live fulfilling and rewarding a diagnosis, they will vary in thinking is likely to be inflexible, lives within a society that accepts severity and complexity. Those and they may have a restricted and and understands them. key characteristics necessary repetitive repertoire of activities. These are bold aspirations, but for diagnosis are known as the As a spectrum condition, autism what do we know about people “triad of impairments” relating to affects each person differently, with autism as they age? Despite difficulties with communication, irrespective of IQ and level of progress in our understanding of social interaction and social functioning. Some will need high autism, relatively little attention imagination.5,6 levels of support throughout has been paid to date to the process The core problems in autism their lives, have no language, of ageing2 and what we can do to relate to the development of and very severe challenging ensure that people with autism the social instinct (the ability to behaviours; others will be able have the same opportunities as relate to others) in childhood. to attain academic qualifications other citizens to live healthy, Consequently as individuals and achieve great things in their fulfilled lives as they age. with autism develop, they chosen career, though they may Autism is a lifelong usually find huge problems in continue to struggle with social condition, which is now thought social understanding and in relationships and understand to affect one in 100 people.3 their relationships with others. the complex social interactions While it was first recognised For example, they may find no happening around them. as a distinct syndrome in the pleasure in sharing company with In addition, many have GM | Midlife and Beyond | Aprll 2011 www.gerimed.co.uk Clinical practice 231 markedly different sensory As parents age, they may In coming to sensible experiences to people without no longer be able to support conclusions, we need to know autism. This may affect one or their autistic children, but there more about the ageing process in all of the senses. Some people is evidence that they are not general. There is a scant evidence report being unable to filter out supported by professionals or base. More research is needed background noise, an aversion friends either. This puts a great into the specific issues related to to particular textures in food responsibility onto other family autism and ageing, but it is not or clothing, a fascination with members. When asked about their enough to wait until we know the particular light patterns, or a son or daughter's future, 85% answers to these questions. We hypo- or hyper-sensitive response of parents said they had serious need to do something now. to pain. worries about what would happen The National Autistic Society Autism is not a unitary when they were no longer able to has introduced a health screening condition and there are thought support them. tool to assess personal health to be many factors involved in We still know little about and family health history to be causation. Genetic factors have long outcomes for adults with autism, completed regardless of age. This been implicated,7,8 but these are especially the older age group, will capture essential information complex and solutions related to or whether there are changes in that will allow for the assessment genetic therapies are controversial. autism symptoms and behaviours of the risk of particular medical In 2009 the National Autistic related to the ageing process. conditions that have a familial Society surveyed 1400 adults with Tantam’s studies from the 1980s component such as cancer, heart autism, either directly or through and 1990s10 revealed a desperate disease, and diabetes. We have their families, to support their picture of social isolation, high also been developing a bank of campaign to draw attention to the unemployment and mental ill resources to help staff working needs of adults with autism. Some health among the more able with older people with autism 4% (65) of the respondents to the population. This view was gain a better understanding of “I Exist” survey were 65 years or confirmed by recent work by how to support people as they over, while 30% (540) were 40–64 Stuart-Hamilton and colleagues2 grow older. Many care staff who years. This makes a total of 605 comparing adults with autism work with people with autism are respondents over the age of 40 over the age of 40 with those of used to managing younger groups (34% of the respondents).9 the general population, which and, therefore, may have had little The findings of this survey also points to significant levels experience in being with older point to a population who of unemployment, anxiety and people. Without good training, are struggling to have their depression in older adults with they may struggle to understand needs recognised and met. A autism. the issues they face. Similarly, we significantly higher percentage of It is suggested by some that are developing training, based 40–64 year olds had not received brain maturation and adaptation on the Department of Health an assessment (a statutory continues well into adulthood, framework for older people, assessment of their needs under with a consequent reduction in which looks at how people with the Community Care Act 1990) the perceived level of disability autism can be helped to remain compared with 18–29 year olds, for some individuals. It is also independent and healthy into and the survey showed that a suggested that some do in fact older age. considerable number of adults “grow out of” autism, in that they We also need better with autism aged 40 and over no longer meet diagnostic criteria mechanisms for the diagnosis remained reliant on family for for diagnosis. If this is so, and and treatment of comorbid their support. Very few individuals whether it is due to changes in conditions. Dementia rates are in any age group received most of the brain itself or the individual’s increasing, and dementia in the their support from friends, and successful adaptation to social and learning disabled population is the evidence points to people with environmental conditions, are much higher than in the general autism2 becoming more and more matters for conjecture. At present population, even excluding Down isolated as they grow older. we do not know. syndrome. It is important to be www.gerimed.co.uk April 2011 | Midlife and Beyond | GM 232 Clinical practice able to recognise possible signs of of the state to provide it. References dementia and refer on for expert Could this be a double help. Nevertheless, changes in whammy for people with autism? 1. The Department of Health. The National Autism Strategy. http:// behaviour are not necessarily Already socially isolated and bit.ly/dr2xoy (accessed 17 March related to dementia. There could disadvantaged by their condition 2011) be many alternative explanations, and responses to it, will they 2. Stuart-Hamilton I, Griffith G, and the input of people who know face additional problems from Totsika V, et al. The circumstances the individual with autism really a system more attuned to the and support needs of older people well is vital in understanding the needs of the majority? What of with autism. Welsh assembly government; 2009. http://bit. possible reasons for such changes. those already settled in residential ly/h1aQGg (accessed 17 March Health issues apart, the services? Will their entitlement 2011) social and economic and legal to funding be lost? Could they 3. Baird G, et al. Prevalence of implications of ageing should be forced to move on from disorders of the autism spectrum also be considered. The majority familiar surroundings and people in a population cohort of children of adults with autism spectrum as a consequence of arbitrary in South Thames: the Special Needs and Autism Project conditions live with carers in budgeting on the part of a local (SNAP). The Lancet 2006; 368: the community, some of whom authority? Who will defend or 210–15 may themselves be ageing or fight for them when their parents 4.