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Coping with autism
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| Anita Sheehy with Joseph, three, and his brother Tom, ten |
ONE in every 100 people is said to be affected by it, but autism remains a largely misunderstood condition.
Common held beliefs range from everyone with autism has a genius-like quality, to the fact that they're simply naughty children who can't be controlled.
"These misconceptions are often fuelled by the fact that autism is an invisible disability, often with no physical symptoms," explains Jo-Anne Keys of the Essex Autistic Society.
"The invisibilty of autism can sometimes lead to people viewing children with it as badly behaved or out of control.
"But some of the behaviours exhibited by people with autism could be a way to cope with how they experience the world. They need to be supported and understood," she says.
Jo-Anne also urges parents, who may suspect their child is showing autistic tendencies, to seek help.
Early intervention is very important," she says.
"Although autism is a life long condition, for which there is no cure, strategies can be used to help parents to manage behaviour and improve quality of life for the whole family."
We speak to two south Essex families about their own experiences of life with an autistic child.
MARIA Griffin noticed something was different about her son when he was just six months old.
"I just noticed Alfie was different to other children. He used to get distressed when other babies were around. He didn't enjoy their company at all. That was the first worry I had," says Maria, of Leigh.
Her other big concern was his speech - or lack of it.
"He started saying a few words when he was one, but then it was like he decided he didn't want to be part of our world. He became completely introverted." Now, approaching four, Alfie remains non-verbal and in nappies.
Because of her early suspicions and desire to get as much help for Alfie as possible, Maria and her husband Ralph had their son's autism diagnosed at the earliest opportunity.
"Some parents can't cope with it and want to keep saying it'll be fine, usually because it's so very painful to come to terms with. But Ralph and I are the type of people who need to be able to face up to things," says Maria.
"You do go through a period of time when you find yourself hoping it's not the case. You live through every day, wondering is this the day he's going to talk? but at the end of day you're crushed. There's only so long you can sustain that," she says.
"You have to get to the point where you think to yourself, whatever happens, whatever Alfie's full potential is, we love him no matter what.
"If he's never toilet trained, if he never talks, all we can do is our best by him."
That's why they're so grateful to have got him a place at St Christopher School, Leigh. A school with a specialist autism unit.
"He's been there since September and developed incredibly," says Maria. "They do such a good job."
One thing she'd like to see developed, however, is people's understanding of the condition.
"It would be nice if society could be educated and become a little bit more aware," she says. "They're not in a rage because they're naughty children, they're in a rage because they're frightened. Also it's not because we're bad parents either, that's another misconception.
People have got no idea of how stressful it can be. Ralph and I can't do anything Alfie's not familiar with. He has no idea of danger, which means we can't leave unsupervised for two seconds. It's exhausting. I can understand why only a handful of marriages survive.
Saying that Ralph and I are better people for having him. We're now far more tolerant and understanding of people less fortunate than us. Also when Alfie does give me a kiss, the reward I get from that is incredible.
No-one can love a child anymore than we do. You just have to make the best of everything."
*Maria would like to appeal to anyone looking to support a charity to consider St Christopher School, Leigh, which is a charitable trust.
JOSEPH Sheehy is prone to obsessive behaviour.
His latest is flushing the toilet.
It got so bad that his family didn't even make it into a recent party because Joseph, three, had found the toilets at the venue and was going from one cubicle to the next pulling the chain.
To someone on the outside this could be seen as an amusing childhood anecdote, but to his family it's a source of immense stress.
"It was quite funny to start with, but it's getting difficult now," says his mum Anita. "You know people are thinking why aren't the parents stopping it? But it's not that easy. If they saw what would happen, and how distressed he would become, if we did, they'd understand."
Anita, who lives in Van Diemens Pass, Canvey, with Joseph, his older brother Thomas, 10, and husband Darren, is still waiting for an official autism diagnosis, but the family are already receiving a lot of help and support.
It was after receiving a letter from her health visitor outlining the developmental targets Joseph should be reaching that Anita first realised something was wrong. Because he is very sensitive to sound, it was initially thought Joseph may have a problem with his hearing.
"When Joseph's hearing test came back as normal I didn't know if I should be relieved or more concerned that it could be something more serious," says Anita. "Maybe I was blotting it out but I thought Joseph was too loving and affectionate to have a condition that would make him so distant from the real world and unconnected from us.
"Joseph loves to be touched and cuddled, but I realise now that it is on his own terms. When I ask him to come to me he will always turn his back and sit on my lap. He cannot make eye contact for long and will look away and cover his eyes."
As it's still early days for the Sheehy family, Anita says they are still adjusting to life with an autistic child.
"For a while I used to say he was big for his age," admits Anita. "But as time is going on it's difficult to do that. I'm becoming more aware of what people think and it's hard. It could stop you going out and living your life, but I know you can't let it."
Symptoms vary from person to person, but signs to look out for include:
* Insistence on routine and a resistance to change
* Not mixing socially with others
* Unusual emotional reactions that may appear inappropriate to others - eg screaming, crying, laughing etc
* Little or no eye contact
* Very specific interests which may appear obsessional to others - eg a love of anything to do trains
* No awareness of danger
* Lack of response to verbal cues - eg: appears not to have heard, but problems with hearing have been ruled out
* Parrot-talk', repetition of words and phrases, sometimes with little understanding of their meaning
* Indicating needs by pointing or gestures rather than talking
* Over-sensitivity or under-sensitivity to stimulation such as touch sight and sound
CONTACTS
Essex Autistic Society www.essexautistic.org.uk 01206 577678
National Autistic Society www.nas.org.uk 0845 070 4004
2:55pm Tuesday 6th May 2008
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