Older Scots with autism are ‘invisible generation’

THOUSANDS of older people with autism in Scotland have been labelled an “invisible generation”, often waiting years to have their condition identified and facing a lack of support when they are diagnosed, campaigners claim.

David Silvester - "Id known from an early age that I was different". Picture: Contributed

The National Austistic Society (NAS) Scotland said in many cases these people had their condition misdiagnosed by health workers, leaving them unable to access services to help them.

The charity, backed by people over 50 with autism, has called for the Scottish Government to act on their concerns as it implements its Autism Strategy and hands out £13.4 million to support people with the condition.

Older people with autism will today meet with SNP MSP Mark McDonald at the Scottish Parliament to highlight that, of an estimated 58,000 people with autism in Scotland, more than 11,600 are thought to be over 60.

The campaigners believe that research is urgently required if the long-term health and support needs of elderly people with autism are to be understood and met.

Autism affects how a person communicates with, and relates to, other people, affecting how they make sense of the world around them. While it is often associated with childhood, it is a life-long disability.

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.

NAS Scotland said it had heard anecdotal evidence that clinicians working in age-related specialisms often had a poor understanding of the disability and limited professional knowledge of 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.

“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.”

Mr McDonald said his meeting would bring together a those who make decisions about care and those using service 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,” he said.

“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.”

A Scottish Government spokeswoman said: “We launched the Scottish Strategy for Autism in 2011 and announced an investment of £13.4 million, over four years, to build on improvements to autism services and access to these services.

“The strategy highlighted the need for diagnostic assessment to be available for people across the autism spectrum irrespective of age or cognitive ability.

“The strategy is already beginning to make a real difference to the lives of people with autism although more still needs to be done.

“We have written to all health boards asking for further details on the work they are doing to improve access to diagnostic services in their local board areas.

“Scottish Government officials leading on autism policy will attend a meeting with Mark McDonald MSP and older people with autism at the Scottish Parliament.”

Case study: David Silvester - “I’d known from an early age that I was ‘different’”

Retired joiner David Silvester was diagnosed with Asperger syndrome - a form of autism - two years ago.

The 67-year-olf from Moray said he his condition had been misdiagnosed as bipolar disorder and schizophrenia from his late 20s onwards.

Mr Silvester said his 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,” he said.

“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.”

Mr Silvester said he found it difficult to interpret people’s facial expressions and body language, making it hard to tell the difference between those who were well-meaning and who meant him harm.

“I was very literal in my understanding of what other people said, and complex speech could disorientate me. It was hard for me to think flexibly, so everything from a sudden change of plan to trying to imagine the consequences of my actions was very difficult,” he said.

“As I grew older, I learned to hide what was really going on. But I was constantly struggling to understand the world around me, while battling anxiety and depression.”

After his diagnosis, Mr Silvester said he thought “a world of support services” would become available.

“It was a big disappointment to discover this wasn’t the case. These days, Moray Council is developing its Autism Strategy. I’m actively involved in educating people about autism and encouraging decision-makers to put in place the kind of effective support that will give local people with autism real quality of life and help them become productive members of their community,” he said.

“My aim is to make sure no-one with autism in Moray has to go through the same experiences as me, struggling without a diagnosis or support.

“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.”