Academic journal article European Journal of Social & Behavioural Sciences, The

What's It like Being You? Growing Old(er) with Autism Spectrum Conditions - A Scoping Study

Academic journal article European Journal of Social & Behavioural Sciences, The

What's It like Being You? Growing Old(er) with Autism Spectrum Conditions - A Scoping Study

Article excerpt

1. Introduction

The prevalence of Autism Spectrum Conditions (ASCs) in the UK is currently estimated at 1/100 (Baird et al, 2006). Prevalence in the 1960s, when Autism first began to be diagnosed in children, was estimated 0.5/1,000, showing a steep increase, but Brugha et al (2011) point out that the increase in diagnoses may be attributed to a widening of the diagnostic criteria, coupled with an increased awareness of the disorder by professionals and the public alike. This can lead to the assumption that not only is there a growing population of adults with a diagnosis of ASC, but also that there are an even greater number of adults living with ASC either without a formal diagnosis, with a misdiagnosis, or with no knowledge at all that they have an Autism Spectrum Condition.

The needs of, and services for children and adolescents with ASD have been the focus of much research, but it has been recognised that the same does not apply to adults, especially as they move towards middle and old age (Pellicano, Dinsmore, & Charman, 2014; Müller, Schuler, Burton & Yates, 2003; Wright, Brooks, D'Astous & Grandin, 2013). Not only is research on autism in old age necessary to identify support needs, researchers are also beginning to explore the lifespan trajectory of the disorder (Happé & Charlton, 2009). In recent years, autism related research has experienced a small but decisive shift towards a focus on older adults, and a number of leading academics in the field have highlighted the paucity of available research (Happé & Charlton, 2009 ; Wright et al, 2013). The UK's National Autistic Society (NAS) together with many leading autism researchers have declared an urgent need for research into the experiences and support needs of adults over the age of 50. Happé and Charlton (2012) produced a short review of research on autism in older adults, and identified three main areas for future research, one of which is Quality of Life in Old Age. Mukaetova-Ladinska, Perry, Baron and Povey (2011) highlight the urgency to address and recognise the needs and experiences of older adults with autism.

In 2009, the Welsh government published a report of the circumstances and support needs of older people with autism, whilst in 2010, the National Adult Autism Strategy for England was published. This was the direct result of the 2009 Autism Act, legislation which was passed to secure the rights of adults with autism to access appropriate services. The authors of the Wales Report (Stuart-Hamilton et al, 2009) state specifically that there is a paucity of qualitative data available on the subjective experiences of older adults living with autism.

A systematic review of literature on Autism Spectrum Disorders and Aging conducted in 2013 (Wright, Brooks, D'Astous & Grandin) shows that there is a growing body of research covering many aspects of aging with autism, including cognitive functioning and decline, services for adults with autism, and the prevalence of depression and anxiety in adults with ASCs. It also highlights the need for the development of adequate services to meet the needs of older adults with ASCs. Griffith, Totsika, Nash and Hastings (2011) focus on the absence of accessible individualised services for adults with ASCs in the UK, citing the lack of knowledge within the system of health professionals as the main reason for inadequate support for adults with autism. Unemployment and underemployment is another issue identified by Wright, Brooks, D'Astous & Grandin (2013), with emphasis on the need to develop understanding and flexibility to accommodate individuals with ASCs within the workplace.

The existing research on older adults with autism imparts only a fragmented picture that rarely includes subjective accounts from individuals with autism themselves.

Milton (2014) reflects on knowledge production in studies on autism, highlighting the disparity in different models used to explore autism. …

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