我的“外星”生活

這是CNN一位48歲的管理人員在最近得知自己患有阿斯伯格綜合癥后寫下的一番感言。根據(jù)她本人的意愿，其真實姓名被隱去。

小資料

“Asperger’s syndrome， Autism， Aspie”——3“A”知多少？

阿斯伯格綜合癥（Asperger’s syndrome）是一種主要以社會交往困難及異常的興趣行為模式為特征的神經(jīng)系統(tǒng)發(fā)育障礙性疾病。1944年，奧地利精神病學家Asperger首先提出在分類上，阿斯伯格綜合癥與自閉癥（又稱孤獨癥，Autism）同屬于廣泛性發(fā)育障礙，兩者屬于同一系列中兩種重輕程度不同的障礙。而Aspie一詞則是由美國第一個被確診為阿斯伯格綜合癥的作家及教育家Liane Holliday Willey于1999年首次提出并在日常生活中使用的，用來指代阿斯伯格綜合癥。

作為同屬于一個系列中的兩種疾病，兩者之間的區(qū)別體現(xiàn)在：

·在平衡協(xié)調(diào)能力上，阿斯伯格綜合癥患者通常優(yōu)于自閉癥患者

·在社會適應能力上，阿斯伯格綜合癥患者通常優(yōu)于自閉癥患者

·在語言能力方面，阿斯伯格綜合癥患者基本沒有語言障礙，而自閉癥患者大多伴有語言障礙

Recently， at 48 years of age， I was diagnosed with Asperger’s syndrome. For most of my life， I knew that I was“other”， not quite like everyone else. I searched for years for answers and found none， until an assignment at work required me to research autism. During that research， I found in the lives of other people with Asperger’s threads of similarity that led to the diagnosis. Although having the diagnosis has been cathartic， it does not change the “otherness”. It only confirms it. When I talk to people about this aspect of myself， they always want to know what it means to be an “Aspie”， as opposed to a“1）Neurotypical”. Oh， dear， where to start...

The one thing people seem to know about Asperger’s， if they know anything at all， is the 2）geek factor. Bill Gates is rumored to be an Aspie. We tend to have specialized interests， and we will talk about them， 3）ad infinitum， whether you are interested or not. Recognizing my tendency to 4）soliloquize， I often choose silence， although perhaps not often enough. Due to our extensive vocabularies and uninflected manner of speaking， we are called“l(fā)ittle professors”， or arrogant.

I don’t quite understand small talk， and early in my adult life， 5）solecisms were frequent. At meetings， I launch into business without the expected social acknowledgments. It’s not that I don’t care about people， I am just very focused on task. Do you have to rehearse greeting people to reinforce that you should do it？ I do. I am lucky to have a very dear friend who savors my 6）eccentricities. She laughs， lovingly， about one particular evening at a restaurant. Before she could get seated， I asked her what she knew about the golden ratio and began to spew everything I know about it. I re-emphasize how lucky I am to have her as a friend， because this incident occurred long before I was diagnosed.

A misconception is that Aspies do not have a sense of humor. It is true that we can be very literal， so we often miss the humor in everyday banter， but we can and do enjoy even subtle humor. Our literal interpretations， however， can be problematic. In first grade， whenever someone made a mess in the classroom， the teacher would ask a student to get the 7）janitor. The student would come back with Mr. Jones， who carried a broom and a large folding

8）dustpan. When I was asked to get the janitor， I looked all over the school and reported back to the teacher that I could not find it. After all， the person was Mr. Jones， so the janitor must be the object， right？

I lack the ability to see emotion in most facial expressions. I compensate for this deficiency by listening to the inflections in people’s voices and using logic to determine emotional context. The words people choose， their movements， or even how quickly they exit a meeting can provide clues to emotion. I also have intensified senses—touch， taste， smell， sight， and sound—so I am attuned to lights， noise， textures， and smells. In a “busy”environment， I will eventually go into sensory overload and my mind will go blank. When this happens， I have to “go away” mentally for a brief period to regain focus. When I “return”， I have to piece together what occurred while I was “away”. The additional mental processing I must do to function every day is fatiguing， and I don’t handle“9）ad hoc” very well. Being asked to respond quickly in the midst of all this other processing is difficult， sometimes impossible.

I am so sensitive to touch that a tickle hurts me. This is the hardest concept for most people to understand. How can a tickle hurt？ All I can tell you is that it does， so I avoid being touched except by those who have learned how to touch me. Hugs are dispensed infrequently， but if I do hug someone， I resemble 10）Frankenstein’s monster， arms extended to control contact. When my dad（who I suspect is an Aspie， too） and I hug， we both have “the approach”. In school， other children noted my differences， and I was bullied （and tickled into fits of despair） for years. When you are weird， you are a joke. When you are a loner， you frighten people. It’s always the quiet ones...

I am married （wow?。?and my brilliant husband is an absolute sweetheart. I don’t know any other man who has the self-confidence to be pushed away （sometimes sharply）， both physically and mentally， as often as he has been. I live with anxiety， because the world can be overwhelming and people have expectations that I always， sooner or later， fail to meet. I cannot begin to tell you how many times I have been told that I am rude， inaccessible or cold， yet I have never purposely tried to harm anyone， nor do I mean to be， well， mean.

I could tell you so much more， but instead let me share one last insight. Don’t pity me or try to cure or change me. If you could live in my head for just one day， you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty， as overwhelming and powerful as it can be， for“normalcy”.

不久前，我在48歲這個年紀被診斷患有阿斯伯格綜合癥。在我生命中的大多數(shù)時候，我知道自己是個“異類”，和其他人不大一樣。多年來我一直搜尋答案，卻一無所獲，直到工作中的一項任務(wù)需要我去研究自閉癥。在那次研究當中，我從其他患有阿斯伯格綜合癥的人的生活中發(fā)現(xiàn)，我與他們有著一連串的相似點，從而得出了那個診斷結(jié)果。雖然有了診斷結(jié)果讓人如釋重負，但它并未改變那份“異類”特性，只是將情況證實了而已。當我向人們談起我的這一面時，他們總是想知道“自閉癥患者”與“神經(jīng)正常之人”到底有何不同。哦，天啊，從何說起呢……

要說人們對阿斯伯格綜合癥患者的了解，應該就是這類人的“極客”特性。傳言比爾·蓋茨就是一個阿斯伯格綜合癥患者。我們往往有著特定的興趣，而且我們會沒完沒了地談?wù)撃切┡d趣，不管你是不是感興趣。因為察覺到自己自言自語的傾向，我時常選擇沉默不語，盡管能這樣自控的次數(shù)可能算不上“時?！?。由于我們龐大的詞匯量以及單調(diào)乏味的說話方式，我們總被稱作“小學究”，亦或是傲慢自大之人。

我不太明白什么是寒暄閑聊，而且在我成年生活的早期，失禮之事時而有之。開會的時候，我直接切入正題，并不夾帶意料之中的社交致謝。并非我目中無人，我只是過于關(guān)注工作。你們需要排演跟人打招呼來訓練自己必須和人寒暄嗎？我需要。我很幸運擁有一位密友，她欣賞我的那些怪癖。某個晚上在餐館里發(fā)生的事情，她一直，親切地，覺得好笑。那晚，她還沒坐下來，我就問她是否知道黃金比例，而后開始滔滔不絕地將我所知的一切噴薄而出。我再次強調(diào)能有她作為自己的朋友是多么幸運的事啊，因為這小插曲發(fā)生的時間遠在我被確診之前。

對于阿斯伯格綜合癥患者的一個誤解就是他們沒有幽默感。的確，我們特別會咬文嚼字，所以我們常常會錯過日常玩笑中的幽默，但是我們能夠，也確實喜歡隱晦的幽默。只不過，我們一字一板的解讀方式，確實是個問題。小學一年級時，每次有人把教室里弄得亂七八糟，老師就會讓一個學生去把清潔工叫來。那個學生就會和拿著一把掃帚和一個大大的折疊簸箕的瓊斯先生一起回來。當我被指派去叫清潔工的時候，我會找遍整所學校并向老師報告說我找不到“它”。終究，那個“人”是瓊斯先生，而“清潔工”肯定是個物件兒，不是嗎？

我不能通過大部分面部表情來解讀情緒。我通過傾聽人們聲音中的語氣變化并運用邏輯來判定情緒的來龍去脈，以此來彌補這個缺陷。人們選擇的字眼，他們的動作，或者甚至是他們離席一場會議的速度都能提供關(guān)于情緒的線索。我也擁有極強的感官能力——觸覺、味覺、嗅覺、視覺以及聽覺——所以我對于光、噪音、材質(zhì)以及氣味極為敏感。處在一個“雜亂”的環(huán)境之中，我最終會陷入感官超載，而且我的腦袋會變得一片空白。當這種事情發(fā)生時，我不得不在心理上“離席”一小會兒以再度集中精神。當我“回來”之后，我還得拼湊起在我“離席”時發(fā)生的事情。這種我每天都必須額外進行的心理過程讓人疲累，而且我不能很好地處理“突發(fā)事件”。在所有的這種另外的心理過程中被要求作出迅速反應是困難的，有時是完全不可能的。

我對于碰觸太過敏感以致于撓癢都會傷到我。這也是大部分人最難理解的部分。撓癢怎么會傷到人呢？我所能告訴你的是它確實會，所以我避免被人碰觸，除了那些已經(jīng)知道了如何與我接觸的人。擁抱是極少有的，但如果我確實要擁抱某個人，我會像是弗蘭肯斯坦的怪物，把手臂伸得長長的以控制接觸。當我的父親（我猜他也是個阿斯伯格綜合癥患者）與我擁抱時，我們都會用那樣的方式。上學的時候，其他孩子注意到了我的異常，而且我被欺負了好多年（并且被撓癢撓到了絕望的境地）。當你跟常人不一樣的時候，你就是個笑柄?？僧斈悛殎愍毻臅r候，你會讓人們害怕。沉默不語之人總能弄出這樣的效果……

我結(jié)婚了（哇?。椅页錾恼煞蚴且粋€絕對的寶貝甜心。我沒見過還有哪個男人能像他那樣有自信，能忍受被我一次又一次地推開（有時還是狠狠地），不管是從生理上還是心理上。我生活在焦慮之中，因為這個世界難以讓人應對，而且人們對我抱有的期望，我知道自己是遲早會辜負的。我無法告訴你我有多少次被告知我很粗魯、難以接近或是冷漠，但我從未蓄意地去試圖傷害任何人，我也從未想過要顯得那么刻薄。

我還可以告訴你更多，但還是讓我再分享最后一個觀點好了。請不要可憐我，抑或是試著治愈或改變我。如果你能在我的腦袋里待上哪怕一天，你可能會因為我用自己那些精致的感官在這個世界上察覺到的眾多美好而流下眼淚。我絕不會用哪怕一丁點那些美好——其震撼而強大，去換取那所謂的“正?！?。