Growing older with autism

Autism was not included in the main European or American classification of diseases manuals until the late 1970s and early 1980s, with Asperger syndrome included even later.[39] Children were initially the subject of most diagnoses of autism. As a result, few people, who are now older, have a diagnosis of any autistic spectrum condition and gaining a diagnosis for older people can be hard, because it is difficult to draw up an accurate picture of early years’ development. Many older people with autism will therefore have inaccurate diagnoses, or will be viewed as simply odd or eccentric. For some, their difficulties adapting to change are dismissed as a product of being older, and therefore ‘stuck in their ways’, or are attributed to mental health problems or dementia, which can lead to inappropriate treatment.[39]

There is also little research into the needs of older people with autism.[72] Recent studies [73, 74, 75] indicate that they are socially isolated, and have difficulties sustaining employment and relationships.

Diagnosing older people with autism is important, so that they can benefit as others do from the greater understanding and access to services that a diagnosis can bring.[72] People face some key transitions as they age, such as retirement and bereavements, and it is important they receive appropriate support.[20]

Loss of carers

A significant transition faced by many people with autism as they get older comes when their parent carers are no longer able to support them at home. Many autistic people continue to live at home with carers well into adulthood, and parent carers are therefore likely to be nearing and entering old age while still providing care to people with often very high needs.[35] The potential for sudden breakdowns in caring arrangements is high, and too many people with autism may find themselves hurriedly placed in settings that may be expensive, distant, inappropriate, or all three. Other people may be left living at home without adequate support. This is a key cause for stress and concern for parents and carers as they approach older age.[75]

It is important, therefore, that careful planning, involving the person with autism and their family, takes place well in advance of a change to the family situation.[76] This will help to address the concerns of both the autistic person and their carers. Emergency plans, detailing what support will be put in place for someone if their care arrangements break down, can alleviate anxiety, and lessen the likelihood of an emergency residential placement.

Accessing healthcare

Older people experience the same difficulties with accessing healthcare that we outlined in the section on ‘Joint working’, and this can lead to avoiding healthcare until absolutely essential.[72] Entering the healthcare system at the point of severe health decline can result in expensive nursing home placements or hospitalisations. People may also be less likely to ask for adaptations to their property, or for home help, ‘Think autism’ sets one of its priorities around improving services for older people,[19] and the Care Act 2014 includes a duty to provide independent advocacy services for those who find navigating the care system difficult and have no support networks to assist them. Older people with autism may find this helps them to access services at the point of need.