時尚雙語:阿斯伯格綜合症與戀愛

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.'

他舉止溫和，心地單純，待人體貼入微，而且循規蹈矩地像個紳士。然而，使Sarah戀上Keith的這幾個優點，正是阿斯伯格綜合症的特徵。阿斯伯格綜合症的患者在生活中並不少見，Anna Moore採訪了一些患者及他們的戀人/配偶。

Sarah Hendrickx和Keith Newton親密地坐在一起，像任何正在熱戀中的情侶一樣，聊着只有他們自己才明白的趣事，兩人不時地發出笑聲。

Keith剛剛到達Sarah在Hove鎮的家中。看得出，兩個人爲能有幾天單獨在一起而感到由衷地高興。像以往一樣，Keith關掉了手機，並解釋說：“我到這兒來，就是要和Sarah在一起。”他們不會去走親訪友-- Keith沒有自己的朋友，而且他在社交場合總是覺得不自在--他們只是準備吃很多的巧克力，一起散散步，看看電視。Sarah說：“我們常常暗地裏感到慶幸，因爲我們看到別的戀人還不如我們倆快樂。”

但是幾天以後，Keith就要開車返回自己在50英里以外位於漢普郡維坎鎮的家裏。他單身一人，有着一份計算機程序員的工作。他們的將來也不過如此。儘管兩人五年前就認識了，他們不會像其他戀人那樣“發展”兩人的關係。他們既不會住在一起，也不會要孩子。現年39歲的Keith身材瘦高，姿勢有點古怪，像個大男孩。儘管兩人只相差一歲，Keith顯得比他的的實際年齡要小10歲。

而Sarah在19歲時就生了孩子，已經離過兩次婚。她堅信沒有別的女人能受得了Keith。“他這麼一個帥哥，想找哪個靚女還不是小菜一盤。可惜他和誰也長不了。”Sarah咯咯地笑着說，“最多三到四個月。只要一談到房子孩子銀行賬戶，他立馬就開溜。”說到這裏，兩個人哈哈大笑。

以前他們可不是這樣的。他們最初是通過約會網站認識的。一開始，兩人之間總是磕磕絆絆的。對Sarah來說，Keith這個人很難理解。比如，他會毫不掩飾地告訴Sarah說，每個週末相聚對他來說就足夠了。他不會和她住在一起，也不會搬得離她更近一點。Sarah認爲Keith自私，冷漠，很難接近。而Keith覺得Sarah太多事，太難伺候，太高嗓門。

最後，有一件事的發生，使兩人的關係獲得了重生--他們找到了Keith的“不通人情”，拒人千里，看不到兩人關係的前景，而且似乎也不想看到的箇中原因：Keith是一個阿斯伯格綜合症（Asperger's syndrome）患者。

在這樣大的年齡才獲得診斷並不奇怪。阿斯伯格綜合症是一種發育障礙，屬於孤獨症範疇。人們對它的認識只有60年的歷史，而它的診斷標準在1992年才被收入世界衛生組織的診斷手冊。因此，大多數成年患者不知道自己患有此症。

關於患者在人羣中的百分比，各方面的估計相差很大。一般認爲，孤獨症類的患者在人羣中的比例是百分之一，男性居多，男女比率是9比1。阿斯伯格綜合症患者通常智力高於平均水平。但是，他們在體恤他人方面，在語言溝通方面，以及爲人處事方面，存在很大的困難。

阿斯伯格患者感到那些無形的社交規則很難掌握，而我們一般人的言談舉止無一不受這些規則左右。阿斯伯格患者對談話中的雙關語感到十分費解，他們對別人的面部表情以及說話的語調也不能解讀。他們過於鑽牛角尖，過於咬文嚼字，以至於常常（並非有意地）得罪他人。由於世俗生活對他們來說太難以駕馭，很多人只能機械性地按固定程式行事，避免與人交往，或埋頭於狹隘偏僻的興趣愛好中，以獲得心理上的安全感。

目前，兒童患者比較容易獲得診斷，而且學校必須給這類孩子提供額外的幫助。但是在20年前，人們認爲這樣的孩子只是比較怪，不合羣而已，他們得自己去克服這些缺陷。這種情況一直延續到他們長大成人。對於一個阿斯伯格綜合症患者來說，戀愛，結婚，爲人父母，會是他們一生中最爲艱難的階段。

Louise Cobett是英國全國孤獨症協會的熱線電話的負責人。她說，現在越來越多的電話諮詢是關於情侶或夫妻關係中的阿斯伯格綜合症的問題。

“6年前我剛來這裏上班的時候，大多數電話是孩子的家長打來的。而現在我們接的電話，更多是關於成人患者的。由於阿斯伯格綜合症與遺傳有關，在孩子獲得診斷之後，父母們通過閱讀了解，一些女士發現他們的丈夫也是患者，或者一些丈夫發現自己也有類似的問題。”Cobbet說，“他們在電話中顯得非常吃驚。實際上他們感到事情不大對勁已經多年了，就是不知道爲什麼。必須承認的一點是，天天與阿斯伯格綜合症打交道絕不是件容易的事。”

Maxine Aston是《阿斯伯格戀愛》一書的作者（出版社Jessica Kingsley，定價£14.95），也是爲數不多的專爲受阿斯伯格綜合症影響的夫妻/戀人做心理諮詢的專家之一。她在過去十年裏做的問卷調查表明，這些人裏的百分之七十五都曾求助於心理諮詢。“阿斯伯格綜合症可以說是一種“人際關係障礙”。”她說，“它影響到人的交流能力，與人交往能力，和從他人角度看問題的能力。”Aston的客戶有些甚至來自遙遠的日本，新西蘭，和加拿大。據Aston的經驗，阿斯伯格患者的戀愛關係有着一些共同的模式。

“大多數人是通過成人約會網站認識的，”她說，“對於阿斯伯格綜合症患者來說，這的確是再合適不過的途徑。”過去，阿斯伯格患者基本上與約會無緣，而如今互聯網爲他們提供了一個極好的渠道（用Aston的話說，是爲他們“打開了閘門”）。

在約會網站上，你完全不必費盡心機地去找人套近乎，你只需列出你的擇偶條件，然後根據這些條件選擇合適的對象。儘管有不少阿斯伯格患者無業或者做着低於自己能力的工作，但是還有很多人有一份很好的職業。“從字面上看，他們很有吸引力。”Aston說，“醫生，信息技術顧問，工程師，律師... 40歲左右，未婚-所以沒有負擔。在網上，他們還可以通過電子郵件與對方交流以增進相互的瞭解。在見面時，女士們一般都會對這些彬彬有禮，並且有點老式紳士味道的男士頗有好感。”

至少對Sarah來說的確如此。她覺得Keith與她見到的所有男人都不一樣。“第一次約會結束時，他在我的臉頰上親了一下，並與我握手。”她回憶道。“這和其他男人完全不同，那些人總是一杯一杯地給你灌酒。Keith好像一點也不趕時髦，不隨大流--我還以爲他是個佛教徒。”

但是根據Aston的經驗，這種好印象不會長久。“女士們墜入情網之後就想呵護這個不夠世故，看上去需要保護的男人，想幫助他長大。而當關系確定之後，女士們才發現，她們自己在情感上的需求得不到滿足。”

“阿斯伯格患者想把事情辦好。”Aston說。“他想使他的女友高興，可是他對察言觀色一竅不通。在兩人關係剛開始時，他的女友成了他迷戀的對象，而他的女友則爲此受寵若驚。五年下來，當他的注意力轉移到別的事情上去了，他下了班就會不再和她打招呼，自顧自地到車庫裏去鼓搗汽車。那時候，事情就完全兩樣了。女士們常常這樣對我說：“他要不就是患有阿斯伯格綜合症，要不就是世界上最最自私的男人。”

另一個問題是自我孤立。阿斯伯格患者一般都有感官方面的問題。強烈的噪音，氣味，光線，都會給他們的感官造成很大的不適。再加上與人交往方面的困難，他們對參加聚會，走親訪友，慶祝生日這類活動唯恐避之不及。

“我曾見過一對夫妻，已經80多歲了，結婚也50年了，現在才明白他們的問題在哪兒。”Aston說。“他們決定不離婚，但是女方在附近買了一幢房子，男方只是吃飯時過去。這樣，老太太可以隨意請親友到自己的家裏坐坐，而老頭則可以住在自己的房子裏按自己的習慣和興趣生活。有不少這類夫妻選擇了維持婚姻但不住在一起的生活方式。”

Penny Jones是一個會計師，住在牛津。六年前，在她的那位身爲信息技術顧問的丈夫Chris被診斷爲阿斯伯格綜合症以後，他們就試着這樣生活了一段時間。Chris是從一個電視節目裏知道阿斯伯格綜合症的，當時他自己正由於工作壓力太大在家病休。看了這個節目之後，他就去看了一個專家。這位專家將他診斷爲高功能阿斯伯格綜合症患者。

“我們相識是在1995年。他這個人一向都有點與衆不同。”Penny說。“阿斯伯格患者有很多優點。我喜歡他們直率的個性。他們不懂得勾心鬥角。我還是頭一次遇到像Chris這樣對別人沒有要求的人。一般來說，男人總是想讓女人這樣那樣的，可是Chris對人是全盤接受。他不僅聰明--他的智商超過150--而且很風趣。”

然而，與阿斯伯格綜合症共處絕非易事。“他常常把自己關在屋子裏擺弄計算機。”Penny說。“我倆雖然同在一個屋檐下，但是形同陌路。我們極少一起做飯洗碗，因爲Chris不能忍受鍋碗瓢勺敲擊的噪音。”

有了孩子以後--Luke今年9歲，Beth7歲--Chris感到對雜亂無章的家庭生活更加難以適應。“生活失去了規律和寧靜。全家出去度假常常半途而廢，因爲頭三天Chris還能湊合。但是沒有熟悉的環境，脫離了他習慣的日程，又沒有計算機，他整個人簡直就無法運轉。於是，每天當我帶孩子們出去玩時，他就往電視機前一坐，靠着一大箱啤酒打發時光。Chris靠大量喝酒來對付自己的阿斯伯格綜合症--而喝酒本身也成了個問題。”

當Chris搬出去時，他們本來的想法是兩人還保持夫妻關係，但是最終沒有成功。“他不那麼大量喝酒了，而且很高興有了自己的空間，”Penny說。“他一般和我們呆幾個小時之後就回他自己的住處，24小時內不再見人。最後，我實在過不了這種無人作伴的日子。”他們在去年離了婚。

一般不建議阿斯伯格患者及其配偶尋求常規心理諮詢。實際上，常規心理諮詢在這種情況下使用，反而會把事情弄糟。“心理諮詢需要調動人的換位思考能力，”Maxine Aston說，“幫助雙方瞭解對方的感受。但是對阿斯伯格患者來說，這是不可能的事。心理醫生可能會要求患者每天花10分鐘談他自己的感受。阿斯伯格患者根本無法做到，因而產生心理壓力，繼而後悔來見心理醫生。”正因爲如此，英國國家孤獨症協會建立了一個（小型）專家檔案庫，提供專爲阿斯伯格綜合症患者及配偶作心理諮詢的專家信息。Aston即是這些專家中的一個。

當然，行之有效的方法也有很多。一個是讓患者將自己的想法寫下來而不是說出來。另一個辦法是讓患者的戀人/配偶把事情說在明處（比如，“我心裏難受，能不能擁抱我一下”），而不是指望患者能讀懂這一需要。但是，最重要的是接受阿斯伯格這一標籤，接受患者在很多方面力不能及的現實，調整自己對對方的期望。“就把帳算在阿斯伯格綜合症的頭上吧。”Aston這樣說。

拯救了Sarah和Keith的關係的那一指診斷書，來的純屬偶然。Sarah當時在一個叫做ASpire的慈善機構工作。該機構致力於幫助成年阿斯伯格綜合症的患者。Sarah瞭解得越多，越覺得Keith與那些患者有相似之處。“一開始，我覺得這簡直不可思議，肯定是Sarah的胡思亂想。”Keith說。“但是當我自己找了一些資料以後，覺得與自己的情況確實太像了，不能不想一想。”

他還說，瞭解阿斯伯格綜合症，是他生活中的一大轉折。他終於明白了爲什麼Sarah總說他過着“孤家寡人的生活”。Keith上學時總是受別的孩子欺負。在大學期間他也還是沒有一個朋友。他這輩子只幹過兩份工作，而且還是同一類的工作。他有過兩個女朋友，但是都沒有多久就吹了（第一個是在他31歲的時候）。“小的時候，你當然是想合羣。但是逐漸地，你總是遭到拒絕，你搞不明白人際交往的那些規矩。到最後，合羣變得實在太費勁了。”他說。“我也想找女朋友，但是我既沒有那個自信，也沒有那個本事。”

對Keith來說，Sarah是一個理想的伴侶。由於她做的就是爲成年阿斯伯格綜合症患者服務的工作，她能夠理解Keith的思維方式，甚至能以他的方式與他交流。她知道哪些場合會使Keith感到困惑不安，對他的迴避或不參與持理解態度，極少勉爲其難。

而Sarah得到的，是一個古怪但是可愛的，善於邏輯思維又體貼入微的男朋友。他還有點老夫子的味道--他總是爲她開門，讓她先走，爲她提着大包小包的東西。看到她的眼鏡髒了，他會替她摘下來爲她擦乾淨。最重要的是，他們兩人確實喜歡和對方在一起，他們有着相同的幽默感。兩人還合寫了一本書，叫“阿斯伯格綜合症--一個愛情故事”（Jessica Kingsley出版，定價£12.99），告訴人們幸福的結局不是沒有可能的，儘管這個結局不在預料之中。

兩個人沒有結婚或同住的打算。Keith認爲自己無法忍受有孩子的生活。但是他們倆好得就像天生的一對兒。“在Sarah這裏，我得到了理解和接納。”Keith說。“我並不想去適應社會上的一切，但是我願意有人能來適應我的世界。在我生命結束的時候，我希望知道在這個世界上，曾經有那麼一個人是理解我的。Sarah使我的這個願望得到了滿足。”