dinsdag 17 januari 2012

Love and Asperger's syndrome



He's gentle, unworldly, highly attentive and charmingly old-fashioned. The catch? The very things that make Keith so attractive to Sarah are symptoms of Asperger's. Anna Moore meets the couples living with this surprisingly common condition

Sarah Hendrickx and Keith Newton sit tilted towards one other, laughing a lot and disappearing down the occasional alley of in-jokes, as couples do when they're still in that early, besotted stage.

Keith has just arrived at Sarah's home in Hove and they're clearly delighted by the prospect of the next few days together. As always, Keith has switched off his mobile phone because, as he puts it, 'my time here is with Sarah'. They won't see anyone else - Keith has no friends of his own and doesn't feel comfortable socialising - but plan to eat lots of chocolate, walk and watch television. 'We spend a lot of time feeling smug,' says Sarah, 'because we see other couples who don't look very happy.'

In a few days, though, Keith will drive back to Wickham, Hampshire, 50 miles away, where he lives alone and works as a computer programmer. This will always be the case. Despite meeting five years ago, they won't 'progress' as other couples do. They'll neither live together nor have children. Although there's only a year between them, at 39 Keith is so gangly, gawky, boyish and cute that he could be ten years younger than he is.

Yet Sarah - who had a child at 19 and has two marriages behind her - is confident that few women could put up with him. 'God, he's so gorgeous he could have anyone - but not for long,' she says, laughing. 'Three or four months max… then, when the conversation turns to homes and babies and bank accounts, he'd be gone!' The two burst into laughter.


It wasn't always like this. The couple met through internet dating and the first stage of their relationship was fiery and fraught. To Sarah, Keith was 'a puzzle'. He'd plainly state that their blissful weekends were enough for him, that he'd never live with her or even move nearer. Sarah frequently found him selfish, cold and distant. Keith found Sarah hard work, demanding and 'screechy'.

Ultimately, only one thing allowed them to start again from scratch - they uncovered the reason for Keith's 'insensitivity', his aloofness, the fact that he could see no future with Sarah nor seemed to want one: Keith has Asperger's syndrome (AS).

Such a late diagnosis is not uncommon. Asperger's - a developmental condition that falls within the autism spectrum - was identified more than 60 years ago but became a standard diagnosis only in 1992 when it entered the World Health Organisation's diagnostic manual. As a result, the majority of adults with the syndrome almost certainly grew up without knowing they had it.
Estimates vary enormously as to the prevalence, but one in 100 people is thought to be on the autism spectrum, and it is more common in males by a ratio of nine to one. People with AS normally have above-average intelligence but great difficulties with empathy, communication and social interaction.

People with AS struggle to understand the unwritten social rules that help most of us act and speak appropriately. They find it hard to decipher figures of speech, facial expressions and tones of voice, and are frequently (but unintentionally) concise and literal to the point of rudeness. Since the 'real world' becomes an extremely stressful place, many retreat into their own safe haven of routine, solitude and obsessive special interests.

Today AS is likely to be recognised in a child, and his school will be told he needs special support. Twenty years ago, however, he'd be the 'geek' who didn't quite fit but was left to get on with it. And that struggle has continued into adulthood. For someone with AS, the minefield of relationships, marriage and parenthood can be the hardest part of all.

Louise Corbett manages the National Autistic Society (NAS) helpline and confirms that more calls are coming from couples who have recognised Asperger's in their relationship.
'When I started six years ago most of our calls were made by parents about their children,' she says. 'Now we get more adult-related calls than child-related.' As Asperger's seems to run in families, many women identify it in their husbands - or their husbands see it in themselves - only after their child has been diagnosed and they've read the literature. 'They call in absolute shock,' says Corbett. 'Often they've been experiencing difficulties for years without knowing why. There's no way around it: Asperger's can be very hard to live with.'

Maxine Aston, the author of Aspergers in Love (Jessica Kingsley, £14.95), is one of the few counsellors to work specifically with couples affected by AS. Her surveys and questionnaires from the past decade suggest that 75 per cent of such couples seek counselling. 'I'd almost say AS was a "relationship disorder",' she says. 'It affects communication, interaction and the ability to empathise. Any research will tell you they're the key ingredients for a successful relationship.' In Aston's experience - and desperate clients come from as far as Japan, New Zealand and Canada - Asperger's relationships follow a common pattern.
'A huge number seem to meet on dating websites,' she says. 'For someone with AS it's the perfect route.' Where once many people with AS were effectively barred from the dating game, the internet now provides the perfect point of entry (it has, as Aston puts it 'opened the floodgates').

Bypassing the enormous challenges involved in chatting someone up, it allows you to make a checklist and then select according to criteria. Although many people with AS are unemployed or underemployed, others are at the top of their profession. 'On paper they look amazing,' says Aston. 'Doctors, IT consultants, engineers, solicitors… They could be in their forties but have never married - so no baggage. The internet also allows them to build a rapport by email,' she continues. 'When they meet, women are often very charmed by this polite, gentle man with an old-fashioned appeal.'

This was certainly true for Sarah who found Keith completely different to anyone she had known. 'At the end of our first date he kissed my cheek and shook my hand,' she recalls. 'So different to all the guys that ply you with rioja. Keith seemed so untouched by needless fashion and peer pressure - I thought he was a Buddhist!'

However, in Aston's experience, this appeal can wear thin. 'Women fall in love and want to nurture this unworldly, slightly vulnerable man and help him grow up. As the relationship settles, though, they often find their own emotional needs aren't being met.
'Someone with AS probably has good intentions,' she goes on. 'He wants to make her happy but can't read the signs. At the beginning of the courtship the woman could become his obsession and she has probably never experienced such attention. Five years down the line, when he has focussed on something else and returns from work, yet again forgets to say hello and goes to the garage to take the car apart, things are very different. Women often say to me, "He's either got Asperger's or he's the most selfish man on the planet."'

Another problem can be the isolation. People with AS frequently have sensory difficulties - loud noise, strong smells and bright lights can be almost painful. This, coupled with difficulties in social interaction, means that parties, family gatherings and big birthdays drop off the radar.

'I once saw a couple in their eighties who, after 50 years of marriage, realised what the problem was,' says Aston. 'They decided to stay together, but she bought a cottage up the road and he visited for meals. She could have friends and family over and he had space for his routine and interests. Quite a few couples decide to stay together but live apart.'

Penny Jones, an accountant from Oxford, tried this, following the diagnosis of her husband Chris, an IT consultant, six years ago. Chris learnt about AS through a television programme while he was off work with stress. He subsequently saw a specialist who placed him high on the Asperger's scale.

'We got together in 1995 and he'd always been very unusual,' says Penny. 'There are lots of positives about Asperger's. I like its straightforwardness. There's no game-playing. Chris was the first person I had met who just let people be themselves. Most men want you to be a bit more like this or more like that. Chris just accepts you. He's also very intelligent - he has an IQ of over 150 - and very funny.'

However, AS was hard to live with. 'He did lock himself in the room with the computer,' she says. 'We were under the same roof but not together. Rarely did we share the preparation and clearing away of meals because Chris couldn't stand the noise of cutlery and crockery.'
When their children were born - Luke is nine and Beth is seven - Chris found the chaos of family life even more difficult. 'It wasn't predictable and calm enough. Family holidays we gave up on,' she says. 'He would try his best but by day three, without his familiarity, his routine, his computer, you could see all his systems shutting down. Then he'd spend each day with a large crate of beer in front of the television while I took the children out. Chris drank vast quantities to cope with Asperger's - that was another problem.'

When Chris moved out, the plan had been that they would remain a couple, but in the end this didn't work out. 'He drank far less and was clearly so much happier in his own space,' says Penny. 'He would spend a few hours with us, then go home to his bolthole and not talk to anyone for 24 hours. In the end, I couldn't cope with the massive periods of time alone.' The couple divorced last year.

Conventional counselling isn't recommended for AS couples - in fact, it frequently makes things worse. 'Counselling works on empathy,' says Maxine Aston, 'helping you understand each other's point of view. That won't happen if you have AS. You might be told to spend ten minutes a day talking about your emotions. Someone with AS can't do it, feels pressurised and disappointment sets in.' For this reason, the NAS has a (small) database of couples counsellors who specialise in AS - of which Aston is one.

There are many strategies that can help. One is to write things down instead of saying them. Another is for the non-Asperger's half in the relationship to spell things out in no uncertain terms. ('I am feeling sad and would like a hug'), rather than hope their partner will read the cues. However, the key is understanding the Asperger's label, accepting its limitations and adjusting expectations. 'It's almost like blaming it on the Asperger's,' says Aston.
The diagnosis that saved Keith and Sarah almost happened by accident - Sarah got a job working with ASpire, a charity that supports adults with Asperger's. The more she learnt, the more she recognised in Keith. 'At first, I thought it was just a mad, crazy Sarah idea,' he says. 'But as I researched it, the similarities became too great to ignore.'

Learning about AS, he says, was 'life-changing'. Suddenly what Sarah describes as his 'isolated, biscuit-eating life' made sense. Keith had been bullied at school and gone through university with no friends at all. He'd had only two jobs in his life doing the same thing and two very short-lived relationships (the first at 31). 'From an early age you try to join the world, but gradually, with rejection and not being able to understand social situations, it becomes too taxing,' he says. 'I wanted relationships with women but didn't have the confidence, the tools or the means.'

In Sarah, Keith has found the perfect partner. She works with AS adults for a living and now understands his thought processes and almost speaks his language. She can foresee stressful situations, accepts his frequent need to be alone and rarely asks for more than Keith can give.

In return, she has a charming, quirky, logical and attentive partner who is still touchingly old-fashioned - he always opens doors for her, carries her shopping and whips off her glasses to clean them if he sees they are dirty. Most importantly, the two clearly love each other's company, share the same sense of humour - and have co-written a book, Asperger Syndrome - A Love Story (Jessica Kingsley, £12.99), to show that happy endings are possible, even if they're not quite the endings originally envisaged.

There are no plans of marriage or moving in, and Keith certainly doesn't think he could cope with children. But they seem like soul mates. 'With Sarah, I get acceptance and understanding,' says Keith. 'I don't necessarily want to join the rest of the world - but I'd like someone to join me in mine. I'd like to know at the end of my life that there's been one person who got me. That's what Sarah does for me.'


You can order the book by clicking the link


http://www.telegraph.co.uk/health/3354140/Love-and-Aspergers-syndrome.html

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