Ageing and Autism – the invisible generation

old 300x225 Ageing and Autism   the invisible generationThe National Society of Autism Scotland, UK  has recently voiced it’s concerns over an ageing demographic of people with Autism or ASD, who are slipping through the net in terms of care because they haven’t been diagnosed.

This is a problem on a larger, worldwide scale. We regularly read that the diagnosis rate within children is 1 in 88 in the USA, and 1 in every 100 children in the UK, but what about the older generation? One in five people with and Autism or ASD diagnosis is over 60.

Older people with autism are commonly misunderstood and misdiagnosed by health professionals. Missing out on the vital care and therapies which could enhance their lives. The number of undiagnosed people over 60  in Scotland is thought to be currently around 11,600, leading to them being known as “the invisible generation”.

Campaigners and Autistic individuals met with the Scottish Parliament on August 24 to discuss a new policy for dealing with the ageing Autism community in Scotland called Autism Strategy Scotland, which has government funding of £13.4M.  

NAS Scotland said that autism in older people was underdiagnosed, raising concerns about the measures in place in health boards to diagnose these individuals.

A recent survey of adults with autism by the charity revealed that more than a third have waited three years or more for a diagnosis.

They also raised questions over what support would be effective to support autistic adults in future, as little was known about how the condition changed throughout later life.

Robert MacBean, policy and campaigns officer for NAS Scotland, said:

“Huge strides have been taken in changing attitudes towards autism and increasing understanding of the lifelong, disabling condition that touches the lives of over 58,000 people in Scotland.

“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 Scottish Government has a chance to finally deliver these adults the support they need by making sure that their views, experience and advice are taken into as it implements its Autism Strategy for Scotland. It’s essential decision-makers at all levels don’t miss this vital opportunity to make a difference to thousands of lives.”

Retired joiner David Silvester, 67, from Moray, was diagnosed with Asperger syndrome – a form of autism – two years ago.

His condition had been misdiagnosed as bipolar disorder and schizophrenia since he was in his late 20s.

Speaking to the BBC he said:

“My diagnosis came as a huge relief. For most of my adult life I’d asked ‘what’s wrong with me?’ The diagnosis finally explained my life, who I am and took away a lot of the negative feelings I’d projected onto myself.

“When I was very young, research into Asperger syndrome was also in its infancy. But I’d known from an early age that I was ‘different’.

“If the adults around me had known what to look for, they would have seen classic Asperger’s traits. On the outside I appeared articulate and functioning well. But inside I was struggling.

“It would be great if the public could see that older people with autism are not ‘weird’ or ‘odd’. We just see the world in a different way. We need the right support at the right time, but we also have skills, talents and abilities.”

Diagnostic tests have improved significantly in recent years, in turn increasing the number of children who are diagnosed with Autism. There are still a huge number of “the invisible generation” out there, who without proper diagnosis could be missing out on help entitled to them.

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Shân Ellis About Shân Ellis

Shân Ellis, is a qualified journalist with five years experience of writing features, blogging and working on a regional newspaper. Prior to working as a journalist, she was a ghost writer for top publishers and was closely involved in the editing and development of book series. Shân has a degree in the sciences, and 5 A levels. She lives in the UK and is the mother of an autistic child.