應該向自閉症孩子坦白他的病情嗎？

01-03

孩子進入小學一年級馬上就兩個月了，目前適應得還算可以，可以坐著學習不擾亂秩序，也可以順利上好體育課（這是我們之前最擔心的）。因為他提前自學過拼音和數學課，課業完成得也不錯。班主任老師向我們抱怨過他喜歡玩門，我們和他溝通過後（達成學校的門不能玩，家裡的門可以隨意玩的協議），情況也有所改善。
他現在好奇心很盛，比同齡人晚了好幾年，總算也變成了個好奇寶寶。在坐公交車時，他聽到愛心卡的提示音，然後我們就聊過什麼是殘疾人以及要給老弱病殘孕讓座位的事。
其實他自己就有殘疾證（以前在特殊機構時辦的，為了享受政府的學費減免），只是他從來都不知道。他兩年前就離開機構上幼兒園了，現在似乎對那裡並沒有什麼印象。

總之，他似乎並不覺得自己和別人有什麼不同。
我不知道是不是應該在他大一點，比如說十五六歲時，告訴他這些無可奈何的事。

我建議先暫時不說，等他自己問的時候再談。

因為自我認知的能力是不斷增加的，小的時候未必他能發現自己與他人有區別。正因為自我認知能力的增加很多自閉症到青少年階段會發現自己和別人的區別，這時候跟他說他自己的性質是怎麼樣的，幫助他理解自己的特點，同時也要告訴他雖然和別人有區別，但不代表你自己沒有閃光點，沒有長處。自閉症並不是「壞事」或者傳統意義上的「疾病」，自閉症是不同的腦思維模式。

不要說。有可能的話瞞一輩子。否則他會這樣想：因為我是自閉症，所以我可以犯錯有各種不正確的行為。

我是題主。

這個問題在知乎上沒熱度，我在Quaro上找到了熱度很高的相同問題，在這個問題下，有許多自閉症成年人的心聲，我整理一下，希望會對和我一樣陷入迷茫的家長有所幫助。

我的英語水平不高，只能草率地翻譯，但是保證不會弄錯主要意思，希望能幫助到有英語閱讀障礙的知友。

這是地址，有英語閱讀能力的知友請跳轉 https://www.quora.com/My-3-year-old-son-has-been-diagnosed-with-Asperger-syndrome-How-should-I-tell-him-when-the-time-comes-and-should-I-be-public-about-it-with-my-friends-and-family

A:一個名叫Mandy的成年阿斯博格女孩的自述。

I would have liked if my parents said something like this:

我希望我父母曾這樣對我說：

"Hey Mandy,

「嗨，Mandy,

Let"s talk about some differences in people for a minute. What kinds of hair do people have? What kinds of eyes? What about how tall people are?

我們花點時間聊聊人類的不同之處吧。不同的頭髮，不同的眼睛，不同的高度

Well, even though we can"t always see it, people are made differently on the inside too - what kind of stuff is on the inside? Heart, lungs, stomach, and BRAIN!

其實，人的內在也不相同，只是不常表現出來。人的內在是指的什麼呢？心，肺，胃和大腦。

Brains can be different in all kinds of ways. It"s a very complicated organ and there are so many pieces that make it whole. Even if a few of those are different, it can make people think very differently. Imagine how many possibilities there are for kinds of brains.

人的大腦可能在各個方面都不相同，它的結構非常複雜。大腦只要一點點不同，就會導致人們的思想天差地別。

Do you think your brain is different? (I knew I was different at about age 5 in my Kindergarten classroom, so I do think this is an appropriate question to ask). How is your brain different?

你認為你的大腦是與眾不同的嗎？（我五歲當時還在上幼兒園時就知道我和別人不一樣，所以我認為這個問題並不超綱。）你的大腦是特別的嗎？

That"s right! You are very smart and don"t have trouble learning anything new. You can read alone for hours and enjoy the company of adults more than children. The way your brain has grown makes you very special in a lot of ways.

對，你非常聰明能學會任何東西，你可以一個人閱讀好幾個小時並且更喜歡和大人合作。你特別的大腦讓你變得很特殊。

There are also some things you might struggle with. I"ve noticed you are very sensitive to the textures of foods - especially bananas and tomatoes; you won"t wear anything but the softest stretchiest pants; and you walk around during recess by yourself talking about math problems you don"t really understand instead of playing with the other kids.

這也會讓你遭遇挑戰。你對食物的質地很有興趣，特別是香蕉和蕃茄；你只穿最柔軟有彈性的褲子；在課間〔譯者註：這裡有詞不懂〕你自顧自解決沒搞懂的數學題而不是和別人一起玩。

Sometimes it"s difficult for you to talk to other kids and that"s something you"ll have to pay extra attention to. We will help you work on that and find ways for you to practice in safe environments until you feel confident and comfortable.

你有時會很難和別的孩子交談，這事需要你花費特別多的精力。我們會幫你在你覺得舒適有把握的環境下練習。

There are all kinds of brain differences people can have. In your case, it"s called Autism and there"s lots of people who have a brain similar to yours. Some of them have written books about some challenges you"re more likely to face, so you can be prepared ahead of time. (Therapy as an option for them to consider could be brought in at this point).

人類的大腦有許多不同之處。你的這個不同叫自閉症，有很多人和你一樣，他們中有人寫了一些書提到你將面對的挑戰，你可以提前準備一下。（可以讓他們自己考慮是否接受治療。）

Anytime you have questions or concerns or just want to talk more about it, we are here. We love you and we want you to have a happy, healthy, and successful life."

任何時候，只要你有疑慮，就可以和我們說。我們愛你，希望你快樂，健康並且活得成功。」

Obviously the conversation should be adjusted for age appropriateness and you should check that the child is following and understanding the conversation. Ask questions and ask if they have a question. Encourage the dialogue often and keep a positive attitude about it.

家長應該根據孩子的接受能力調整談話內容，確保孩子真正理解到你們的意思，並且讓孩子向你們提問，這樣能促進孩子有個積極態度。

Depending on comprehension level, you could also turn the conversation around on NTs. What strengths and weakness do they have? What could mom and dad work on? (In my case we probably would have had to use someone else as an example because I suspect both my parents are on the spectrum - but you get the idea).

根據孩子的理解能力，你可以讓談話限定在一個範圍內〔譯者註：這裡有詞不懂〕。要考慮：孩子的能力怎樣？父母能做什麼？（如果是我父母，可能會用自己當例子，因為我猜他們可能都處於自閉症譜系之中。）

As a child, I already knew I was different. I needed my parents and guardians to acknowledge this and explain (not just tell) to me why I was still EQUAL.

作為一個孩子，我當時已經知道我和別人不一樣。我需要父母和監護人知道這個情況並解釋清楚（不僅僅是告訴）就算我有不一樣之處也是普通人類。〔譯者註：這句不知道是否準確〕

Regarding friends and family: need to know basis.

相關的朋友和家庭要對孩子的情況有基本了解。〔譯者註：這句不知道對不對〕

待續