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(xué)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(yīng)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(jì)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(dāng)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。……