A FORMER nurse who was diagnosed with autism in her 40s is backing a campaign to help improve awareness and build more tolerant attitudes towards those with the condition.
Karen Deverill, 48, worked for nearly three decades as a ward manager and midwife.
However, she became known as difficult to work with, frequently alienating colleagues by demanding perfect adherence to rules and protocols, or reporting them for talking inappropriately about a patient or administering medicine later than a doctor had dictated.
It was not until three years ago that she knew why. After her ten year old son was diagnosed with Asperger's Syndrome, Karen asked her psychiatrist whether she might have an autistic spectrum disorder too. She tested positive and it all made sense.
"I'd been referred to mental health services 17 years prior to that, and undergone regular hospital admissions. It made sense of difficulties I had had throughout my life."
She had always felt depressed – even though she had a happy marriage, a lovely son, a nice home and a job she loved. She had been unable to cope with noise or social situations.
Now she's backing a campaign by the National Autistic Society aiming to improve the general public's understanding of autism, and and build more tolerant attitudes to the some of the traits which come with it.
While 99 per cent of the public have heard of autism, only 15 per cent of autistic people and their families think the public understands it.
The campaign is called Too Much Information, in recognition of the sensory overloads and meltdowns which people with autism can experience.
Karen knows those well. Busy environments disorientate her, which is why she preferred nursing on night shifts, and repetitive noises can make her nauseous, while the unexpected siren of a passing ambulance can literally knock her to the floor. "If I saw it coming I might be OK, but without warning, I would just fall over," she says.
She was unable to understand the social aspects of working life, or why her approach made her unpopular. She ended up isolated and stressed and eventually left her job. She doesn't blame the co-workers who ostracised her for their lack of understanding, and says she might well have felt the same in their position.
But she does wish she had got more appropriate help earlier, and suspects there are other women in her position. It was thought many more boys than girls suffered from autism, but NAS says it is gradually becoming clear that the numbers are more equal.
NAS spokeswoman Jo Ann Hamilton says girls may be more adaptive and better at making friends. Girls are more nurturing and so a caring friend may help someone cope with the condition.
But many end up in inappropriate contact with mental health services, she says, and like Karen wait years for diagnosis. "We have had people diagnosed in their eighties," Hamilton adds.
Karen, of Old Kilpatrick in West Dunbartonshire, was in the mental health system for 13 years and believes her life would have been completely different if her Asperger’s had been identified sooner. A mentor provided through NAS is helping her grow in confidence. "Now I think of myself as normal and the world as abnormal. I'm nearly 50. If I want to behave a certain way, I will. Why should I worry?" she says.
NAS Too Much Information campaign is designed to bring about concrete changes in attitudes too the one in 100 Scots who are on the autism spectrum. Using films and other methods to share the experiences if autistic people and their families, the charity aims to bring about a measurable shift in understanding Research will be carried out again in three years to see if it has had an impact.
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