Most parents will admit breathing a small sigh of relief when childhood tantrums end and their offsprings leave home. But for Heather Fiddler there is little prospect of her two grown up daughters fleeing the nest and leading independent lives. Her twins both suffer from a rare syndrome which has left them dependent on her. Suzy Poole reports.
EIGHTEEN MONTHS ago, Heather Fiddler was told her twenty-one-year-old twins Ruth and Elizabeth were suffering from Asperger's Syndrome, a form of autism which affects social skills and behaviour. The diagnosis was a mixed blessing.
For Heather, of Bierley, Bradford, it signalled the end of a nineteen-year fight to find out what was really wrong with her daughters. For Ruth and Elizabeth, it meant they had little prospect of leading a normal, independent life.
Since the age of eight when they were diagnosed with learning difficulties, the twins have been passed from paediatricians and clinical psychiatrists to occupational therapists and social workers.
"I always thought that something wasn't right but the health professionals pooh-poohed me," says Heather. "When they first went to school, people just thought they were slow developers. But when they were eight, I went to a parents' evening and was told quite matter of fact that Ruth was backward which was a bit of a shock."
At first, Heather thought the twins had suffered because they were born prematurely. But as they grew up, the unrecognised symptoms of Asperger's Syndrome started to show.
"They had difficulty comprehending, had a very short memory and it took a long while for things to sink in. But they were extremely able at telling the time and remembering telephone numbers from an early age. You often get that with autistic children and Asperger's is similar.
"They find it very difficult to understand things sometimes. Ruth had an ear infection recently and when the doctor said it was in the canal, she thought he meant a canal with boats. They take literal meanings. They can think that there are literally cats and dogs raining out of the sky if someone says it which can be quite frightening."
Born and bred in Bradford, Heather moved to Cleethorpes with her ex-husband when the twins were four but returned to her home town after her marriage failed. The twins rarely see their father now, who has remarried and has a new family.
For ten years Heather has struggled as a single mum, with only her parents in Low Moor to support her. Not only does she act as full-time carer for Ruth and Elizabeth, she is the family bread winner as well, working part-time as a practice nurse.
She admits she is exhausted.
"I have to tell them to get up and coax them into doing things, reminding them it's time to set off somewhere," says Heather.
"If I'm at work they have to look after themselves but they don't know how to dress themselves for the winter. Elizabeth wears lots of layers of clothes, that's one of the symptoms. You really have to look after them as you would do for a much younger child.
"They're not able to cook meals for they're frightened of the cooker and have poor motor co-ordination which makes it difficult. I have to support them with financial transactions and go to the dentist and the doctors with them. If we go anywhere different, we have to practise the routes. If it's unfamiliar, they find it very hard to deal with.
"It's very frustrating for me and them. I have to work to support them. I have to be their carer and house them and there's no prospect of that getting any easier for me."
But the biggest problem, explains Heather, is that as young women eager for independence, there is no provision to help them get on with their lives. Support services for Asperger's Syndrome in the district are virtually non-existent, with suffers left in limbo between the health authority and social services.
Ruth and Elizabeth have to satisfy themselves with daily trips into town and keeping themselves occupied at home. And schemes designed to help people into work, such as Work Able, have only confused rather than help.
Heather says: "Ruth had a lot of difficulty with placements on Work Able and staff were wondering what was going wrong. In the end they put it down to communication problems as she didn't understand what she was expected to do and they misunderstood her. There's support for people with Downs Syndrome but Asperger's has yet to be recognised. It's very frustrating."
And as vulnerable individuals, people have taken advantage of them. Staff at one nursing home where Ruth was placed pretended a resident was dead and she rushed home in tears. A few days later, she came home and told her mum the woman had completely recovered and was sat up in bed.
A simple task such as going into town can be fraught with worry. Ruth recently had her purse snatched when someone asked her for money for a bus. And it was only through banging into someone who knew her that she managed to get to the police station and return home safely.
They may be vulnerable, but they are extremely caring. The twins' ambitions are to work with children or the elderly, but they would need additional support in the job.
Suffers of the syndrome also find it hard to socialise. In some, the symptom can take the extreme form of anti-social behaviour such as alcoholism or stalking if undetected, but in Ruth and Elizabeth, it means they have difficulty relating to their peers.
Heather says: "They've always enjoyed talking to adults, but it's difficult for them to make friends. And because they're twins, it's hard to break into their own little world.
"They only socialise when they go to church and that's only with certain ones who will talk to them. They have a good rapport with small children and the elderly are good at talking to them."
But Heather has to be careful to avoid certain situations. Loud noises like fireworks scare the twins so much it makes them ill, and going to St George's Hall fills them with fear. Heather will not even consider going to the pictures.
And there's one obsession which is particularly hard to understand - on their many shopping trips into town, the twins buy realms of A4 paper. Heather confesses it drives her mad.
"They just buy it and come home with more which is really frustrating. If they were occupied for say three days a week, they wouldn't always go into town. I would know that they are occupied and know they were fulfilled. It makes for a better atmosphere when I get home. At the moment, when I get home, I'm absolutely shattered and they're bored.
"I'm happy to look after the girls for as long as necessary, but it's very frustrating. Girls usually want to settle down and get married, but I don't see that happening."
Heather may have given up the dream of seeing her daughters settle down with a family of their own, but she is determined to raise awareness of the condition which has affected all their lives.
"My life is stagnant and the twins are getting no further and they're young women. If they were able to cope, I could work more hours and we would be better off financially.
"If we'd had the diagnosis much earlier, it would have been easier. We had to fight to get support at school and even then nobody understood them. For it to take 20 years to recognise the problem is quite horrifying."
A NEW support group has recently been set up to help sufferers of Asperger's Syndrome and their families. For further information, call Dr Shripati Upadhyaya at Leylands Medical Centre on Wednesday afternoons on (01274) 770771.
Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.
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