Improving access to social care for adults with autism

Growing older

Autism was not included in the main European or American classification of diseases manuals until the late 1970s and early 1980s, with Asperger's Syndrome included even later (46). 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. Even now, gaining a diagnosis for older people can be hard, because it is difficult to draw up an accurate picture of early years' development without traceable records or the input of parents (46). 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' (47).

It also means that there is little research into the needs of older people with autism. A recent study (47) indicated that older people with autism were socially isolated, and had difficulties with sustaining employment and relationships. It concluded that 'the problems that manifest themselves in youth are destined to become lifelong companions', although it identified fewer behavioural difficulties among older people with autism than younger ones (47).

Diagnosing older people with autism is important, however, so that they can benefit as others do from the greater understanding and access to services that a diagnosis can bring (see Awareness raising and diagnosis section). People face some key transitions as they age, such as retirement and bereavements, and it is important that people receive appropriate support.

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 people with autism 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 substantial care to people with often very high needs (23). 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.

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 (48), to address the concerns of both the person with autism 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.

Older people with autism are less likely to access physical healthcare on their own and often enter the healthcare system at the point of severe health decline. This can result in expensive nursing home placements or hospitalisations. They are also less likely to ask for adaptations to their property or home help.