SHARON Ruderham knew there had to be some mistake when she opened her cable TV bill and found a charge of more than £300.
Someone in her house had started watching scores of pay-per-view movies, then cancelled them after just ten seconds. When she called the cable company and tried to explain, the employee who answered the phone told her: "I don't care if your children
are autistic."
For Sharon and husband Geoff, who live in Edinburgh, it is just the latest trial of caring for not one but two teenagers who have autism. Andie, 17, and his sister Samantha, 15, both have severe communication problems and need constant care. Sharon and Geoff believe increased awareness of autism can help make life easier for young adults like Andie and Samantha, which is why they agreed to talk to The Scotsman to mark World Autism Awareness Day on Thursday.
Autism, which affects an estimated 500,000 families in the UK, is defined by the Disabilities Trust as "a lifelong developmental difficulty which affects the way a person communicates and relates to the people around them".
Fifteen years ago, it was a subject the couple knew little about. "I'd seen Rain Man and that was about it," Sharon says.
The causes of autism are not fully understood, but in Andie's case the trouble started just after he was given the MMR jab.
"At about 14 months old he got rushed into hospital - he had febrile convulsions," explains Sharon. "The boy who came out of hospital wasn't the boy who had gone in. He stopped doing things he used to do."
"But because he had passed all his pre-one milestones nobody believed us. No-one listened until he was three and then they told us there was nothing anybody could do."
Sharon realised she would have to give up her plan to become a social worker in order to help Andie, and soon afterwards began to suspect younger daughter Samantha was also affected.
"With Sam we noticed from a very early age she was doing things that Andie was doing," Sharon says. "Things like waggling her fingers - which is a very typical thing with autistic children."
When Andie was four and a half and Sam was nearly two the doctors confirmed her fears. She says: "That was devastating. The day she got diagnosed I sat down and cried. When you first get the diagnosis it is like dropping a bomb into your world. When you first have children you have aspirations, you have ideas. You start imagining: will they go to college, will they go to university? All your dreams go out of the window - you don't know what is going to happen. We didn't know a lot about autism, and the information was limited. We kept being told: 'They won't talk, they won't show affection'."
Despite being told Sam would never talk, Sharon and Geoff persevered, using the Hannan system, which involves touching objects and repeating their names. Gradually Sam learned to name objects and to respond to questions, although her answers can be hard for a person outside the family to understand. Andie has very little speech.
When he was seven, Andie sparked a major police search when he went walkabout and on another occasion he walked into a house, started playing with a child's PlayStation and was hit by the householder, who presumed he was a burglar.
Geoff and Sharon have a "zero tolerance" policy for bad behaviour, believing that, just because their children are autistic does not mean they should be allowed to get away with things.
Sharon explains: "If Andie gets upset, he is not allowed to lash out at an another person. When he got in his teacher's face and repeated something he had learned from a video he got told off. He may have a communication disorder but we will still explain to him: 'You can't do that to another person'. We explain things to them as best we can. It takes a long time to teach our children."
Whereas some autistic children find it hard to show affection, Sam and Andie are happy to take part in a family hug for the camera. And if anyone asks, "What's wrong with you?" both are trained to say: "There is nothing wrong with me. I am autistic."
But even today, the two teenagers have no concept of stranger danger. The doors inside the house all lock, and a high fence has been built around the back garden.
"If you think about most 15-year-olds or 17-year-olds they are going to be going out with their friends, but ours can't do that," says Sharon.
Sam goes to Kaimes school in Edinburgh and Andie is at Struan School in Alloa. Geoff volunteers at a community radio station, Black Diamond FM,
but otherwise he and Sharon are full-time carers. They are entitled to respite care of four hours a week and one weekend a month, but it can be hard to find the right carers.
Planning for the future is also difficult. "You have to wonder what happens when you're not there, and that thought never leaves me," says Geoff. "I am 57 now and I am very aware of my limited lifespan. When I go, what happens to Andie? Where will he live? What will he do? And that leaves Sharon with a fully grown autistic daughter."
Despite the difficulties this is clearly a happy family. The living room is decorated with photographs of Andie, Sam and their older brother Raymond, and Sharon proudly displays beautiful wooden boxes Sam made at school. She tells me her daughter makes fantastic cakes and beams with pride as we watch a video of her singing.
Recently, Sam has begun performing at autism-awareness events and fundraisers under the name "Samantha E".
Sharon says: "For me that is the indication of where we are now. It's her music, it's her expression, it's her doing something she loves and sharing it with other people."
While the video plays, Sam skips backwards and forwards through the room, a big happy smile on her face. It is clear she is communicating with us in her own way.
As I leave, Andie is playing computer games. I say goodbye but he doesn't answer. Sharon taps him on the shoulder. "Goodbye, Claire," he says. In this household moments like that are a sign of real achievement.
EARLY INTERVENTION KEY TO PROGRESS AUTISM is one of the autism spectrum disorders - brain development conditions that affect people for their lifetimes, isolating the person from the outside world through an inability to communicate.
Normally diagnosed by age three, the condition affects people to differing degrees, with some unable to communicate in any sense at all and others able to communicate but without a normal awareness of how to interact in the world around them.
The cause of the condition is unknown, but genetics are thought to play a part, and the Scottish Autism Society points to research that suggests other factors can impede the development of the brain in the womb, during childbirth or in the first few months of life.
Birth trauma is thought to have an impact, as do conditions such as tuberous sclerosis and fragile X syndrome. There is ongoing debate about the role that childhood vaccines play in the cause of autism, but at present, no scientific research exists to link vaccination and its onset.
Diagnosis is made by studying behaviour, rather than physiological testing. Common behavioural characteristics include repetitive actions, repetitive patterns of communication, difficulty in social arenas and high anxiety, often brought about by change.
The condition has no known cure and treatment is restricted to caring for and managing the behaviour of autistics through specialist education programmes. Autistic children respond particularly well to highly structured education programmes and early intervention is thought to increase the chances of progress.
The condition was first recorded in 1943 by Dr Leo Kanner of Johns Hopkins Hospital in Baltimore, US. At about the same time, Dr Hans Asperger recorded a similar, yet less severe, form of the condition in Germany. His syndrome now resides on the autism spectrum alongside conditions such as Rett syndrome and pervasive developmental disorder.
The Scottish Government says one in every 110 people (or 45,000) in Scotland has autism, and according to figures from the Autism Speaks campaign group, the condition is four times more likely to develop in boys than girls.
On Thursday, World Autism Awareness Day will attempt to raise the profile of this condition and the success that can be had by early intervention.
For more information visit:
www.worldautismawarenessday.org More Info:
www.autism-in-scotland.org.uk 