It’s almost two years since Elaine Jenkins received the diagnosis that was to change not just her life, but the lives of her immediate family.
The grandmother was 55 when on August 25, 2010, she was told that she had Asperger syndrome. But while there was a fear of knowing she had a form of autism, she admits there was a sense of relief that at last there was finally a reason for all her actions from childhood through to adulthood.
Known as a ‘hidden disability’ because you can’t tell someone has Asperger’s from their outward appearance, people with the condition have difficulties in three main areas: communicating with others, interacting with people and knowing how others think and react.
For Elaine, the crisis that finally led to her diagnosis was living next to the former McCowan’s toffee factory in Tryst Road, Stenhousemuir. When the plant went to round-the-clock production with constant noise and heavy lorries continually arriving, she found it impossible to cope.
Married to husband Brian (56) for 38 years, he along with two sons Scott (36) and Andrew (32), runs Bee-Jay Flooring and they were often away from home for long periods of time. In recent years, the family has also taken over running the Ochilview Bar in the former Stenhousemuir FC social club.
All of this led to strain for Elaine, who is gran to Brodie (4) and Emily (2), and, coupled with having the condition fibromyalgia which affects the whole body, causing constant pain and tiredness, she collapsed. This eventually led to meetings with a clinical psychologist who made the Asperger’s diagnosis.
Living in the Larbert and Stenhousemuir area all her life Elaine is well known and is very much aware that many people will be shocked to learn she has autism. But, despite the reservations of her loved ones, she is determined to raise awareness about the condition. This is her story:
The very late diagnosis at my age has, without a doubt, been life-changing to my immediate family and this is only a very small part of the very long journey of discovery we have been on since being aware of this disability and it is just the tip of the iceberg, having never before looked back or been unaware of everything associated with this hidden disability.
I have to stress that I did not get this disorder because of what happened in my life, rather it was the severe ongoing changes that highlighted the disorder.
My whole family has become indirectly affected by the lifelong impairments no-one knew I was suffering from.
I have lived my life with these unknown difficulties and have always followed set rules and routines while being mostly on my own, along with a very rigid way of thinking, following the old school values and high moral standards I was very strictly raised under.
I had always followed the beliefs to treat everyone as an equal and with respect – then the rules as I knew them and had always lived by, suddenly changed.
This situation with the factory next door had a major impact on my mental and physical health as I tried everything possible to find a fair solution to a very difficult dilemma. I received a lot of opinions, written promises and assurances throughout the ongoing years and as I took things literally, something I now realise I had always done and is a symptom of Asperger’s, and for the first time in my life I began to experience severe emotional distress.
I had feelings of acute anxiety and anger that saw me acting completely out of character as the situation got steadily worse and I was very angry to be put in this predicament.
I contacted Scottish Autism and it was a great relief for everyone concerned with my wellbeing to be able to sit down and talk with someone who understood this disability.
I was advised to read material relating to Asperger’s and this did help. I became aware the best way to communicate is to write down what you can at the time about anything causing difficulties or anxiety as it can be very difficult for family and others to understand the degree of verbal and mental impairments when trying to have a face-to-face conversation, and the frustrations this causes.
I have read a lot about autism disorders which mentions children or teenagers but not a lot about the difficulties suffered by a very late diagnosis.
Our family life has had to change dramatically and all roles reversed as they have become my carers.
I lost what little independence I still had left and Brian’s own health became affected as he cared for me while trying to continue working through our difficulties.
I am now 57. Autism and Asperger syndrome are identified as mental and behavioural disorders.
If you have a diagnosis on the autistic spectrum you are defined as being vulnerable in law under the terms of the Mental Health Act 1983. I did not previously consider myself as a disabled individual, far less a vulnerable one.
If you were subjected to anything in the aftermath of the changes to my strange moods and behaviour then I apologise.
My previous nickname used to be Mother Teresa but became the She Devil!
My family now know that I have had this all my life and nothing is going to change but we can now go forward with a better understanding of the difficulties.
Writing this has not been easy and I cannot explain why I have this very huge drive to tell part of my story and for me to be talking openly about mental health issues is almost surreal, but if it helps to raise awareness and it can help bring about the support needed to others with this condition, then I will have achieved something positive.