Raising Jamie hasn't been easy. But I wouldn't have him any other way

As the controversy over the MMR vaccine deepens, parents are learning to dread any signs of withdrawal or lack of responsiveness in their children. But for Janice Ballard, life with her autistic son is still a joy.

Roger Dobson
Sunday 10 February 2002 01:00
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Janice Ballard should, according to popular mythology, be a desperate woman, traumatised, racked with grief. After all, her nine-year-old son Jamie is autistic. But she is not. Not only does Mrs Ballard love her son, she would not have him any other way.

In the continuing controversy over claims of links with the MMR injection, autism has again been portrayed as a much-dreaded disorder with afflicted children and their parents condemned to a fate almost worse than death.

"The wrong message has been sent out that autism is this big, black hole that children disappear into. But it isn't like that at all. There is life after a diagnosis,'' says Janice, 43.

"There are down moments, of course there are, but you really love your child for who he is. Jamie has enriched our lives, and I wouldn't want him any other way. I wouldn't want him 'normal' now because he is who he is, and I know a lot of other parents think the same way.''

Janice and her partner, Peter Cameron, a musician in the West End show Les Misérables, first suspected something was amiss with Jamie about 12 months after he was born. At first they thought there was something wrong with his ears because he appeared withdrawn.

"We thought he had a hearing problem because he wasn't responding like other children. He never did any of the pointing that little babies do when they see something that interests them. Peter would hold him to an upstairs window to watch the big red buses go by, but Jamie took no notice. MMR had no relevance to Jamie's autism because we knew there was a problem before he had his jab,'' she says.

"He had checks and they eventually said there was absolutely nothing wrong with his hearing. We were still concerned and we went to see the local paediatrician. A social worker there put forward the idea of autism. As soon as autism was mentioned I went away and read anything I could about it. After that, everything started to fall into place.''

But although they now knew that Jamie was autistic, getting a diagnosis proved much more difficult, a problem encountered by many parents.

"The paediatrician was very reluctant to give us a diagnosis. And it took nearly two years, until Jamie was almost three. Then one day we took him to the Maudsley Hospital and they gave us the diagnosis the same day. They said he was classically autistic,'' she says.

Their reaction, she says, was mixed – a sense of relief at finally getting a diagnosis, but concern about what it meant.

"Like most parents, when you first realise there is something wrong with your child you go through a period of shock, almost like grief. But once you get over that, you start to see the child you have, and the way that he is developing, and what a beautiful personality he has.

"Life with an autistic child can be extremely difficult and extremely stressful, but it does have its up-sides as well. As a family we have all learnt a lot about how to deal with people.

"Jamie lives in his own world. It is like he is on a different planet sometimes. He does not communicate, but having said that he is as intelligent as anyone else. It is not his intelligence that is impaired. If he is motivated to do something then he will. He loves swimming. When he is motivated he is like a different child. His eyes sparkle and he is really bright and cheery. It is those sorts of occasions that you get eye-contact with him.

"He has a tremendous sense of humour. When I'm bathing him, and the dog comes in the room, and I put bubbles on her nose – he thinks that's very funny. Sometimes he is really happy and can't stop laughing, and that is simply because he is happy."

But there are down-sides, too. While a baby with communication problems and tantrums is relatively easily handled, a nine-year-old is not. Jamie now boards at Radlett Lodge, a school run by the National Autistic Society in Hertfordshire. He comes home on Friday and goes back on Monday. "He started boarding because we couldn't really look after him. I could no longer pick him up because he was too big and strong,'' says Janice, who is now studying for a master's degree in cognitive neuro-psychology, in order to learn more about autism.

"I have problems when I'm out shopping with him and he is behaving in a so-called anti-social way. A lot of people have very short fuses. I say that he can't help it because he is autistic, but you still get people who talk about you not being able to control your child."

Like other families with autistic children, Janice and Peter have had difficulty in getting all the help they need from councils struggling to cope with the increasing number of people diagnosed with autism. They are required to make a contribution to the boarding costs for Jamie and they no longer get respite care.

"I can't say it isn't hard. The lack of communication can be very difficult. But there are so many more facilities for autistic children now. People go, 'autism, oh no', but there is nothing 'oh no' about it. It's not such a bad thing, it's not the end of life. An autistic child can get as much out of life as anyone else.

"I always remember seeing a highly intelligent autistic woman on TV who simply said it was OK to be autistic. I shall never forget her words. She was right. There really isn't anything wrong with being different.''

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