时尚双语:阿斯伯格综合症与恋爱

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.

Sarah Hendrickx and Keith Newton at Sarah’s home in Hove. 'He's so gorgeous he could have anyone - but not for long,' she h 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'.

advertisementUltimately, 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!'

advertisementHowever, 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.'

advertisementLearning 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.'

他举止温和，心地单纯，待人体贴入微，而且循规蹈矩地像个绅士。然而，使Sarah恋上Keith的这几个优点，正是阿斯伯格综合症的特征。阿斯伯格综合症的患者在生活中并不少见，Anna Moore采访了一些患者及他们的恋人/配偶。

Sarah Hendrickx和Keith Newton亲密地坐在一起，像任何正在热恋中的情侣一样，聊着只有他们自己才明白的趣事，两人不时地发出笑声。

Keith刚刚到达Sarah在Hove镇的家中。看得出，两个人为能有几天单独在一起而感到由衷地高兴。像以往一样，Keith关掉了手机，并解释说：“我到这儿来，就是要和Sarah在一起。”他们不会去走亲访友-- Keith没有自己的朋友，而且他在社交场合总是觉得不自在--他们只是准备吃很多的巧克力，一起散散步，看看电视。Sarah说：“我们常常暗地里感到庆幸，因为我们看到别的恋人还不如我们俩快乐。”

但是几天以后，Keith就要开车返回自己在50英里以外位于汉普郡维坎镇的家里。他单身一人，有着一份计算机程序员的工作。他们的将来也不过如此。尽管两人五年前就认识了，他们不会像其他恋人那样“发展”两人的关系。他们既不会住在一起，也不会要孩子。现年39岁的Keith身材瘦高，姿势有点古怪，像个大男孩。尽管两人只相差一岁，Keith显得比他的的实际年龄要小10岁。

而Sarah在19岁时就生了孩子，已经离过两次婚。她坚信没有别的女人能受得了Keith。“他这么一个帅哥，想找哪个靓女还不是小菜一盘。可惜他和谁也长不了。”Sarah咯咯地笑着说，“最多三到四个月。只要一谈到房子孩子银行账户，他立马就开溜。”说到这里，两个人哈哈大笑。

以前他们可不是这样的。他们最初是通过约会网站认识的。一开始，两人之间总是磕磕绊绊的。对Sarah来说，Keith这个人很难理解。比如，他会毫不掩饰地告诉Sarah说，每个周末相聚对他来说就足够了。他不会和她住在一起，也不会搬得离她更近一点。Sarah认为Keith自私，冷漠，很难接近。而Keith觉得Sarah太多事，太难伺候，太高嗓门。

最后，有一件事的发生，使两人的关系获得了重生--他们找到了Keith的“不通人情”，拒人千里，看不到两人关系的前景，而且似乎也不想看到的个中原因：Keith是一个阿斯伯格综合症（Asperger's syndrome）患者。

在这样大的年龄才获得诊断并不奇怪。阿斯伯格综合症是一种发育障碍，属于孤独症范畴。人们对它的认识只有60年的历史，而它的诊断标准在1992年才被收入世界卫生组织的诊断手册。因此，大多数成年患者不知道自己患有此症。

关于患者在人群中的百分比，各方面的估计相差很大。一般认为，孤独症类的患者在人群中的比例是百分之一，男性居多，男女比率是9比1。阿斯伯格综合症患者通常智力高于平均水平。但是，他们在体恤他人方面，在语言沟通方面，以及为人处事方面，存在很大的困难。

阿斯伯格患者感到那些无形的社交规则很难掌握，而我们一般人的言谈举止无一不受这些规则左右。阿斯伯格患者对谈话中的双关语感到十分费解，他们对别人的面部表情以及说话的语调也不能解读。他们过于钻牛角尖，过于咬文嚼字，以至于常常（并非有意地）得罪他人。由于世俗生活对他们来说太难以驾驭，很多人只能机械性地按固定程式行事，避免与人交往，或埋头于狭隘偏僻的兴趣爱好中，以获得心理上的安全感。

目前，儿童患者比较容易获得诊断，而且学校必须给这类孩子提供额外的帮助。但是在20年前，人们认为这样的孩子只是比较怪，不合群而已，他们得自己去克服这些缺陷。这种情况一直延续到他们长大成人。对于一个阿斯伯格综合症患者来说，恋爱，结婚，为人父母，会是他们一生中最为艰难的阶段。

Louise Cobett是英国全国孤独症协会的热线电话的负责人。她说，现在越来越多的电话咨询是关于情侣或夫妻关系中的阿斯伯格综合症的问题。

“6年前我刚来这里上班的时候，大多数电话是孩子的家长打来的。而现在我们接的电话，更多是关于成人患者的。由于阿斯伯格综合症与遗传有关，在孩子获得诊断之后，父母们通过阅读了解，一些女士发现他们的丈夫也是患者，或者一些丈夫发现自己也有类似的问题。”Cobbet说，“他们在电话中显得非常吃惊。实际上他们感到事情不大对劲已经多年了，就是不知道为什么。必须承认的一点是，天天与阿斯伯格综合症打交道绝不是件容易的事。”

Maxine Aston是《阿斯伯格恋爱》一书的作者（出版社Jessica Kingsley，定价£14.95），也是为数不多的专为受阿斯伯格综合症影响的夫妻/恋人做心理咨询的专家之一。她在过去十年里做的问卷调查表明，这些人里的百分之七十五都曾求助于心理咨询。“阿斯伯格综合症可以说是一种“人际关系障碍”。”她说，“它影响到人的交流能力，与人交往能力，和从他人角度看问题的能力。”Aston的客户有些甚至来自遥远的日本，新西兰，和加拿大。据Aston的经验，阿斯伯格患者的恋爱关系有着一些共同的模式。

“大多数人是通过成人约会网站认识的，”她说，“对于阿斯伯格综合症患者来说，这的确是再合适不过的途径。”过去，阿斯伯格患者基本上与约会无缘，而如今互联网为他们提供了一个极好的渠道（用Aston的话说，是为他们“打开了闸门”）。

在约会网站上，你完全不必费尽心机地去找人套近乎，你只需列出你的择偶条件，然后根据这些条件选择合适的对象。尽管有不少阿斯伯格患者无业或者做着低于自己能力的工作，但是还有很多人有一份很好的职业。“从字面上看，他们很有吸引力。”Aston说，“医生，信息技术顾问，工程师，律师... 40岁左右，未婚-所以没有负担。在网上，他们还可以通过电子邮件与对方交流以增进相互的了解。在见面时，女士们一般都会对这些彬彬有礼，并且有点老式绅士味道的男士颇有好感。”

至少对Sarah来说的确如此。她觉得Keith与她见到的所有男人都不一样。“第一次约会结束时，他在我的脸颊上亲了一下，并与我握手。”她回忆道。“这和其他男人完全不同，那些人总是一杯一杯地给你灌酒。Keith好像一点也不赶时髦，不随大流--我还以为他是个佛教徒。”

但是根据Aston的经验，这种好印象不会长久。“女士们坠入情网之后就想呵护这个不够世故，看上去需要保护的男人，想帮助他长大。而当关系确定之后，女士们才发现，她们自己在情感上的需求得不到满足。”

“阿斯伯格患者想把事情办好。”Aston说。“他想使他的女友高兴，可是他对察言观色一窍不通。在两人关系刚开始时，他的女友成了他迷恋的对象，而他的女友则为此受宠若惊。五年下来，当他的注意力转移到别的事情上去了，他下了班就会不再和她打招呼，自顾自地到车库里去鼓捣汽车。那时候，事情就完全两样了。女士们常常这样对我说：“他要不就是患有阿斯伯格综合症，要不就是世界上最最自私的男人。”

另一个问题是自我孤立。阿斯伯格患者一般都有感官方面的问题。强烈的噪音，气味，光线，都会给他们的感官造成很大的不适。再加上与人交往方面的困难，他们对参加聚会，走亲访友，庆祝生日这类活动唯恐避之不及。

“我曾见过一对夫妻，已经80多岁了，结婚也50年了，现在才明白他们的问题在哪儿。”Aston说。“他们决定不离婚，但是女方在附近买了一幢房子，男方只是吃饭时过去。这样，老太太可以随意请亲友到自己的家里坐坐，而老头则可以住在自己的房子里按自己的习惯和兴趣生活。有不少这类夫妻选择了维持婚姻但不住在一起的生活方式。”

Penny Jones是一个会计师，住在牛津。六年前，在她的那位身为信息技术顾问的丈夫Chris被诊断为阿斯伯格综合症以后，他们就试着这样生活了一段时间。Chris是从一个电视节目里知道阿斯伯格综合症的，当时他自己正由于工作压力太大在家病休。看了这个节目之后，他就去看了一个专家。这位专家将他诊断为高功能阿斯伯格综合症患者。

“我们相识是在1995年。他这个人一向都有点与众不同。”Penny说。“阿斯伯格患者有很多优点。我喜欢他们直率的个性。他们不懂得勾心斗角。我还是头一次遇到像Chris这样对别人没有要求的人。一般来说，男人总是想让女人这样那样的，可是Chris对人是全盘接受。他不仅聪明--他的智商超过150--而且很风趣。”

然而，与阿斯伯格综合症共处绝非易事。“他常常把自己关在屋子里摆弄计算机。”Penny说。“我俩虽然同在一个屋檐下，但是形同陌路。我们极少一起做饭洗碗，因为Chris不能忍受锅碗瓢勺敲击的噪音。”

有了孩子以后--Luke今年9岁，Beth7岁--Chris感到对杂乱无章的家庭生活更加难以适应。“生活失去了规律和宁静。全家出去度假常常半途而废，因为头三天Chris还能凑合。但是没有熟悉的环境，脱离了他习惯的日程，又没有计算机，他整个人简直就无法运转。于是，每天当我带孩子们出去玩时，他就往电视机前一坐，靠着一大箱啤酒打发时光。Chris靠大量喝酒来对付自己的阿斯伯格综合症--而喝酒本身也成了个问题。”

当Chris搬出去时，他们本来的想法是两人还保持夫妻关系，但是最终没有成功。“他不那么大量喝酒了，而且很高兴有了自己的空间，”Penny说。“他一般和我们呆几个小时之后就回他自己的住处，24小时内不再见人。最后，我实在过不了这种无人作伴的日子。”他们在去年离了婚。

一般不建议阿斯伯格患者及其配偶寻求常规心理咨询。实际上，常规心理咨询在这种情况下使用，反而会把事情弄糟。“心理咨询需要调动人的换位思考能力，”Maxine Aston说，“帮助双方了解对方的感受。但是对阿斯伯格患者来说，这是不可能的事。心理医生可能会要求患者每天花10分钟谈他自己的感受。阿斯伯格患者根本无法做到，因而产生心理压力，继而后悔来见心理医生。”正因为如此，英国国家孤独症协会建立了一个（小型）专家档案库，提供专为阿斯伯格综合症患者及配偶作心理咨询的专家信息。Aston即是这些专家中的一个。

当然，行之有效的方法也有很多。一个是让患者将自己的想法写下来而不是说出来。另一个办法是让患者的恋人/配偶把事情说在明处（比如，“我心里难受，能不能拥抱我一下”），而不是指望患者能读懂这一需要。但是，最重要的是接受阿斯伯格这一标签，接受患者在很多方面力不能及的现实，调整自己对对方的期望。“就把帐算在阿斯伯格综合症的头上吧。”Aston这样说。

拯救了Sarah和Keith的关系的那一指诊断书，来的纯属偶然。Sarah当时在一个叫做ASpire的慈善机构工作。该机构致力于帮助成年阿斯伯格综合症的患者。Sarah了解得越多，越觉得Keith与那些患者有相似之处。“一开始，我觉得这简直不可思议，肯定是Sarah的胡思乱想。”Keith说。“但是当我自己找了一些资料以后，觉得与自己的情况确实太像了，不能不想一想。”

他还说，了解阿斯伯格综合症，是他生活中的一大转折。他终于明白了为什么Sarah总说他过着“孤家寡人的生活”。Keith上学时总是受别的孩子欺负。在大学期间他也还是没有一个朋友。他这辈子只干过两份工作，而且还是同一类的工作。他有过两个女朋友，但是都没有多久就吹了（第一个是在他31岁的时候）。“小的时候，你当然是想合群。但是逐渐地，你总是遭到拒绝，你搞不明白人际交往的那些规矩。到最后，合群变得实在太费劲了。”他说。“我也想找女朋友，但是我既没有那个自信，也没有那个本事。”

对Keith来说，Sarah是一个理想的伴侣。由于她做的就是为成年阿斯伯格综合症患者服务的工作，她能够理解Keith的思维方式，甚至能以他的方式与他交流。她知道哪些场合会使Keith感到困惑不安，对他的回避或不参与持理解态度，极少勉为其难。

而Sarah得到的，是一个古怪但是可爱的，善于逻辑思维又体贴入微的男朋友。他还有点老夫子的味道--他总是为她开门，让她先走，为她提着大包小包的东西。看到她的眼镜脏了，他会替她摘下来为她擦干净。最重要的是，他们两人确实喜欢和对方在一起，他们有着相同的幽默感。两人还合写了一本书，叫“阿斯伯格综合症--一个爱情故事”（Jessica Kingsley出版，定价£12.99），告诉人们幸福的结局不是没有可能的，尽管这个结局不在预料之中。

两个人没有结婚或同住的打算。Keith认为自己无法忍受有孩子的生活。但是他们俩好得就像天生的一对儿。“在Sarah这里，我得到了理解和接纳。”Keith说。“我并不想去适应社会上的一切，但是我愿意有人能来适应我的世界。在我生命结束的时候，我希望知道在这个世界上，曾经有那么一个人是理解我的。Sarah使我的这个愿望得到了满足。”