Autism in the elderly too often ignored, warns charity

Study finds less than half of English councils have a diagnostic pathway in place for adults with autism

Elderly people with autism are not receiving the help they require because it is seen as a condition that affects younger people, the National Autistic Society has warned.

Research by the charity, published this week in Getting on? Growing older with autism, has found the condition is under-diagnosed in the elderly, and that less than half of English local authorities have a diagnostic pathway in place for adults.

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, the report found many local authorities are in the dark over what form support will take in the long-term for those with autism. It points out there is a dearth of research into how the condition develops in older age.

The report reveals clinicians working in age-related specialisms often have a poor understanding of the disability and don’t think of it as a condition affecting older people. Professionals have little idea as to how health issues such as dementia might affect adults with autism.

This year’s autism strategy review, the report says, presents a vital opportunity for local and central government to make a difference to thousands of elderly people with the condition. The National Autistic Society (NAS) says funding must be made available for further research into autism and ageing.

Mark Lever, chief executive of the NAS, said: “Huge strides have been taken in changing attitudes towards autism. But there is still a tendency to think of autism as a condition that just affects children, when there are older people with autism in all our communities who need our support and care.

“Too many older adults with autism are missing out on diagnosis entirely and too many are still waiting for their needs to be assessed.  And all too often, it’s unclear what support will be available for them as they get older. This must change.”

The NAS recommends that the Department of Health (DoH) should issue guidance on how government policy on older people applies to people with autism; fund a small-scale research project to investigate ways to overcome the challenges posed by diagnosing adults in older age; clarify how the NICE guidelines should be applied to older people in any information it develops for local NHS bodies on diagnosing autism in adults; and make research funding available for ageing and autism.

In addition, the DoH must incentivise autism training, issue best practice for local authorities on planning the transition into older age of people with autism and amend the Care Bill to include people with autism as one of the groups to have a right to independent advocacy.

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