Health

Sunday 31 August 2014

A world of difference

When difficulties at school led to Kenneth Hall's eventual diagnosis with Asperger syndrome, writes Joy Orpen, his mother little expected to receive the self-same diagnosis

A dynamic Belfast woman's life has been transformed thanks to the tribulations, the joys and the insights she experienced rearing a son with Asperger syndrome.

Kenneth Hall, 20, is a charming, reflective and immensely bright young man who has struggled to come to terms with life. His painful unease is the result of this often misunderstood condition. "People associate Asperger syndrome with both autism and giftedness, which they find intriguing. In reality, it is a wide-ranging condition," says Kenneth's mother, Brenda.

As a boy, Kenneth caused many headaches. "He had no notion of conforming, or of doing anything that was asked of him at home or at school," recalls Brenda. She cites Kenneth's dogged refusal to write. When a pencil was put in his hand, he simply let it fall to the ground. Referring to that time, softly spoken Kenneth says: "I think I wasn't bothered by any sense of authority. As far as conforming is concerned, I am a bit like an atheist who knows about God but doesn't believe in Him. I got into a lot of trouble because I didn't see the point of rules."

He tried his mother's patience in other ways too. He disliked most foods but would eat Red Leicester cheese as long as it was grated in a particular way. He hated the noise of vacuum cleaners, liquidisers and loud chatter. He didn't like playgrounds or being in groups. And he didn't like school.

Kenneth suspects his aversion to formal education was caused by boredom and his low tolerance of rules that, to him, seemed meaningless.

"At five he had read The Chronicles of Narnia and he was obsessed with books," says Brenda.

She tried to get her gentle son to integrate, but to no avail. "He struck me as solitary, but happy with his own company," she says.

When Kenneth went to primary school there were endless problems around his 'poor' behaviour. Brenda resisted having him assessed as she didn't want her son labelled. So she moved him to a Rudolf Steiner school where individuality was valued, and he did seem happier.

In time, his teacher noticed that, though rarely cooperative, Kenneth rallied when something challenging occured. So, Brenda was again encouraged to have him assessed. The results confirmed that while Kenneth had Asperger Syndrome (AS), a condition characterised by "extreme social difficulties", he was also a very gifted child. He got a B in GCSE maths when he was 10.

"I'd never heard of AS before Kenneth was diagnosed," remarks Brenda.

However, it was also acknowledged that Kenneth had been so traumatised by his early educational experiences that he needed some time out, and consequently, his school attendance was reduced to one day a week.

The local education board appointed a home tutor for him, and with the tutor Kenneth began writing by hand at last. It was then suggested he write a book about his experiences.

Brenda thought at best he would produce a few pages stapled together. However, in 2001, Asperger Syndrome, the Universe and Everything by 10-year-old Kenneth Hall was published. In it, he says: "It was very tough when I didn't understand what was different about me. I got blamed for lots of things and people were very unfair. This happens a lot to AS kids."

Around this time Brenda, who was searching for ways to help her son, began learning about applied behaviour analysis (ABA). One of its methods meant that every time Kenneth completed a task he was awarded tokens. These could be saved up and redeemed for prizes such as comics, outings or computer games. It was all to do with modifying his behaviour and helping him fit in.

Kenneth found value in this approach. "I think that was the first time I was being told what I was doing right instead of what I was doing wrong," he recalls. Nonetheless, Kenneth grew increasingly unhappy, so it was decided to send him to a school in Somerset, catering for boys with AS.

"It was the hardest decision I have ever made," says Brenda. But, for Kenneth, it was a good move. "For once I was with people quite like me and for the first time I felt I fitted in," he explains.

His days there were well structured. "Asperger people need a lot of routine," he says. He explains that the school wasn't overly concerned with academic achievements -- the main focus was on social development and on learning lifeskills.

Today, Kenneth is back in Belfast, and living independently.

Thanks to him, his mother has also been on a voyage of discovery, and one of the most surprising revelations is that she too has AS. And the fact that it has a genetic component makes sense to her -- her life was a strain until recently.

"Though I loved music at school, I became a very conformist solicitor as that was what was expected of me," Brenda explains.

"I tend to be overly focused, make endless lists and rush to complete tasks. I stuck at law for years though I hated it. In essence, I cut off the creative side of me. So Kenneth was a big challenge because I could see he was going to be completely true to himself. I began to respect him enormously, though he was difficult."

Eventually, Brenda gave up law and began voluntary work. Then, she bought a guitar and enrolled for a songwriting workshop run by talented musician Bap Kennedy, brother of singer Brian.

Not only did Brenda's composition get a standing ovation, she got her man as well: Bap and Brenda are now happily married. The duo make a hugely creative team, supported by Kenneth who helps with their website, plays bass guitar and takes photographs at their concerts.

"The only loving way forward is to let go of the control," Brenda says. "I needed to accept Kenneth for the extremely valuable and talented person he is. Then I started doing that for myself. Since then I have written three books, painted masses of pictures, recorded an album, played at Glastonbury and got married."

The final word goes to Kenneth, with whom it all began.

"I've seen a lot of changes in Mum since she was diagnosed," he says, "and she is definitely much happier."

L

For details of Brenda and Bap Kennedy's upcoming concerts, or to purchase Brenda's books on Asperger syndrome, see www.bapkennedy.com or www.brendakennedyireland.com 'Asperger Syndrome, the Universe and Everything' by Kenneth Hall , Jessica Kingsley Publishers, see www.jkp.com

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