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Getting on? Growing older with autism

A policy report

Older adults with autism are a neglected group. They have received little attention to date in policy, research or service provision. In large part, this is because autism was only identified in the 1940s and the first generation of adults to be diagnosed in childhood are only now moving into older age. But it needs to change. This report aims to be a first step towards ensuring that policy makers address the needs of this overlooked group.

In this report, we set out the challenges facing people with autism in older age – as reported by them and by the people who support them. We also suggest how changes to central and local government policy can help to meet these challenges and so help all older adults with autism to lead the life they choose.

This report is based on interviews, focus groups and surveys with older people with autism and their families, as well as on the outcome of two parliamentary evidence sessions during which a panel of peers (the Commission) heard evidence from a variety of experts It is clear that government leadership is needed.

This means using the tools at governments’ disposal to encourage or require health and social care services to take steps to better meet the needs of older adults with autism. It also means spearheading work to establish how the needs of older people with autism can best be met – by issuing best practice guidance and commissioning research. At this stage, the key message for local authorities and the local NHS is that they need to plan appropriate services for older people with autism who live in their area, and take steps to ensure that mainstream services are autismappropriate. Data collection will be integral to the success of local planning, as will incorporating this data into local commissioning plans.

This report’s focus is policy, which means that issues we have uncovered that do not require a policy-led solution have not been addressed. This does not mean they are any less important. For example, age-related changes such as retirement can pose significant challenges for people with autism. However, issues like this may be better addressed through, for example, information provision rather than policy changes. This report is limited to the major policyrelated issues raised in interviews, focus groups and the Commission evidence sessions. Additional issues may be important to other older people with autism, their families and support workers, who we did not hear from.

Finally, it is important to note that improving the support we provide children and younger adults with autism is crucial to improving the lives of future generations of older people. During its interviews, the NAS heard about numerous cases in which a lack of support in earlier life has led to hardships in older age. One interviewee told us how difficulties in communicating minor, treatable health issues to doctors in earlier life meant these have now escalated into serious and debilitating problems. Another told us that, unable to cope following the death of his mother, he was forced to give up work, resulting in a diminished pension in retirement.