Older people with autism in Scotland 'invisible'

http://www.bbc.co.uk/news/uk-scotland-24206322

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A charity has warned of an "invisible generation" of older people with autism in Scotland whose condition is often misunderstood and misdiagnosed.

The National Autistic Society (NAS) Scotland said there was still a tendency to only associate the condition with children.

But one in five people with autism is thought to be over the age of 60.

The charity called for action to ensure the needs of elderly people with autism were fully understood and met.

It urged the Scottish government to act on its concerns as it implements its Autism Strategy for Scotland and rolls out £13.4m in funding to support people with the condition.

NAS Scotland said that, of an estimated 58,000 people with autism in Scotland, more than 11,600 are thought to be over 60.

Autism is said to be under-diagnosed in older people, and NAS Scotland has expressed concerns regarding the diagnostic pathways Scottish health boards have in place.

'Vital opportunity'

The charity's recent survey of adults with autism revealed that more than a third have waited three years or more to access a diagnosis.

Question marks also exist over the form effective support will take in the long term for those with autism, as there is little research into how the condition develops in older age, NAS Scotland warned.

And it said it had received anecdotal evidence that clinicians working in age-related specialisms often have a poor understanding of the disability and limited professional understanding on how health issues such as dementia may affect adults with autism.

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."

He added: "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 is essential decision-makers at all levels don't miss this vital opportunity to make a difference to thousands of lives."

'Important event'

Older people with the condition are due to meet the SNP MSP for Aberdeen Donside, Mark McDonald, at the Scottish Parliament on Tuesday to discuss their concerns.

Mr McDonald said: "This will be a very important roundtable event which will bring together a combination of decision makers and service users to learn about the experiences for older autistic people.

"Too often autism is incorrectly viewed as relating to children and young people only, and this can often lead autistic adults feeling that services are not directed to their needs.

"I hope that this will give an opportunity for these issues to be raised with the people who take decisions and advise government on the way in which the autism strategy can be delivered in a way which captures all people with autism."

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.

'Not weird'

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."

He added: "After my diagnosis, I thought a world of support services in Moray would open up to me. It was a big disappointment to discover this wasn't the case."

Moray Council is now developing its Autism Strategy, and Mr Silvester is involved in educating people about autism and encouraging decision-makers to put in place effective support.

Mr Silvester added: "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."