In 1943, when an American psychiatrist – Kanner – identified autism in children, little thought was given to autism in old age. Yet, autism is a lifelong, neurodevelopmental disorder requiring various levels of social support across the lifetime. In his foreword to Temple Grandin’s ‘Thinking in Pictures’ (1995) Oliver Sacks stated, “…we almost always speak of autistic children, never of autistic adults, as if such children never grew up”. Early cohorts of children first diagnosed as having autism are now middle aged or older. Adults with autism are a newly recognised ageing population – a demographic profile which will increase exponentially.
Adults with autism experience a range of challenges, such as communication, socialization, learning, self-help, independent living and adaptation to change. Only 15% of adults with autism are in paid employment. Approximately 85% of individuals with autism present with cognitive and/or adaptive limitations that restrict their ability to live independently. Although some adults with autism can manage with minimal assistance, a significant proportion need high levels of support throughout their lives.
The issues related to ageing with autism are a growing challenge for society. The British government has recognised this challenge with the Autism Act in 2009, its subsequent statutory, Autism Strategy, implementation plans and the National Institute for Health and Care Excellence (NICE) Adults with Autism guidelines. However, as in many other areas of practice, policy aspirations and mandates seem difficult to translate into service or professional resources and adults with autism and their family members continue to experience many unmet needs – the usual shortfall in the policy-practice gap.
Furthermore, despite the important role that services may play, families remain the main providers of support and security for adults with autism. The National Autism Society campaign, ‘I exist’ (2009) reported that 49% of adults with autism in the UK continue to live with, and are supported by, ageing family members. Older parents of an adult with autism experience the tasks of ageing, combined with a lifetime of caregiving and an uncertain future. Adults with autism will in all probability survive their parents. The challenges posed by their impairments in language, social skills, together with any behavioural difficulties and sensitivities to change unique to people with autism, may contribute to difficulties in the planning and preparing for their post-parental care.
The continuation of supportive services across their lifetime for individuals with autism is essential for their wellbeing. At some point in their lives most adults with autism will experience the transition out of their parents’ care with many requiring continued services and support. To date, there is a lack of research on the future service and support needs that adults with autism may require to successfully manage the transition to post parental care. Yet, a lack of future care planning for adults with autism may result in detrimental health impact as well as possible psychological repercussions as a result of sudden changes, inappropriate residential placements, inadequate financial and legal safeguards, and with family or social services unprepared to meet their specific needs. We must begin a dialogue around this transition into middle age and later years today to create a more secure future in which the health, housing and social care needs of this new ageing population, adults with autism, are met.