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Four years ago I was speaking with a girl named Sarah.
四年前我跟一位叫做莎拉的女孩談話。
Sarah said to me, "Chris, I have Asperger syndrome.
莎拉跟我說,「克里斯,我有亞斯伯格症候群。
I guess having Asperger's means there are things I can't do."
我猜有亞斯伯格症代表的是,有些事情,我做不到的意思。」
I believe we need to rethink the autism spectrum.
我相信我們需要重新思考自閉症光譜。
I educate children on their rights
我教育孩子們的立場建立在他們的權益上
and that says we work with children, their teachers and parents.
而也就是說我們跟孩子,老師和家長們一起努力打拼。
I've delivered workshops in about 140 schools.
我在140間學校上過工作坊的課程。
I say how autism is a spectrum of behaviors.
我解釋自閉症如何是一個行為上的光譜。
On one hand,
一方面,
it can cause children to experience social difficulties, anxiety,
它使得孩子經歷到社交困境,焦慮,
obsessive traits and disruptive habits.
強迫症特質和破壞性習慣。
But on the other hand, it provides children
但另一方面,這樣的孩子
with incredible gifts in memory, focus, detail, and visual perception.
在記憶、專注力、細節上,和視覺理解上都會有異於常人的天份。
No two children experience this spectrum in the same way.
沒有兩個孩子在這光譜上有相同的站位。
I met children who might be non-verbal,
我遇過可能具有語言障礙的孩子,
children who were genius innovators and in a galaxy all on their own,
也同時可能是天才發明家,只獨自活在他們自己的銀河系中,
or children like Sarah, who have a mild form of autism,
有或者向莎拉這樣的孩子,具有輕度的自閉症,
commonly referred to as Asperger syndrome.
一般稱之為亞斯伯格症候群。
So when Sarah says to me,
所以當莎拉告訴我,
"Having Asperger's means there are things I can't do."
「有亞斯伯格症表示有些事情我做不到。」
I thought, hang on.
我心想,等等。
We don't have this label for children to say "I can't".
我們並沒有對孩子們貼上「我做不到」這種標籤的習慣。
We have it for children to say "I can".
而是我們對孩子灌輸「我做的到」的想法。
What lead to that rethink
會這樣重新思考的契機是
was an earlier meeting I had with a mom named Lisa.
由於那之前與一位名叫麗莎的媽媽會談。
Lisa had been talking to me about her disruptive child.
麗莎告訴我關於她那個具有破壞性傾向的孩子。
Imagine if,
請試想,
simply because your child doesn't know how to socialize with other children,
就僅因你的孩子不知如何和其他孩子社交,
the world outcasts your son or daughter as "the weird one".
這個世界就將你的孩子或女兒貼上"怪胎"的標籤而放逐。
People start to whisper about you as a parent.
其他為人父母的人們開始在你耳邊耳語,
You're called the bad parent.
你會稱他們為壞父母。
People start to ban you from children's play-dates
人們開始禁止你的孩子參加孩子的玩樂聚會
because your child is just too hard work.
就因為你孩子太認真的工作。
Enough eyebrows get raised about your child
你的孩子引起太多擔憂和關心了
that you're referred to child psychiatrists,
我們將建議你去找精神病學家,
where your child is placed in the fishbowl for seven months
你的孩子將會有七個月的時間在一個毫無隱私的地方生活
as all the experts stare at the strange ways that he or she moves.
且全部的專家都會以異樣的眼光看待他或她的行為。
That was Lisa's life.
那就是麗莎的人生。
She told me how the experts called her up and invited her to a meeting,
她告訴我專家如何叫她和邀請她去參加會議,
where they sat her down, as said this,
在會中他們叫她坐下,然後說,
"Lisa, we're sorry to say
「麗莎,我們很遺憾地告訴你
that everything that you find fascinating about your child
所有你在你孩子身上發現的令人神往的能力
is actually a problem.
其實是個問題。
Everything that you thought you were doing right about your parenting,
所以你認為對於教養做正確的事情,
you're actually doing wrong.
其實都是錯的。
Your child has high-functioning autism.
你的孩子患有高功能自閉症。
That means your child can function,
意思是,你孩子能正常生活,
but there's lot of things your child can't do.
但是有很多事情你的孩子做不了。
Your child will be withdrawn, socially inept,
你的孩子將會與社會脫節、缺乏社交能力、
obsessive, and have anxiety.
有強迫症,且會有焦慮症。
It's highly likely that your child will get worse,
非常有可能你的孩子會變得更糟,
so we recommend that you involve this service in your life constantly."
所以我們建議妳終身持續不斷地參與這項服務。」
I believe we need a rethink,
我相信我們需要重新思考,
because Lisa is my mother.
因為麗莎就是我的媽媽。
And I am that child on the autism spectrum.
而我就是那個在自閉症光譜中的孩子。
I am living and breathing her rethink.
我每天活在和呼吸在她的重新思考對於自閉症詮釋所帶來的改善中。
What my mom did for me when I was growing up
我媽在我成長過程中所做的一切
was she wielded this quiet magic around me.
就是她在我身旁施展了一套魔法保護圍繞著我。
She worked in a background to set up a network of people,
她在幕後努力建立起一個人脈網路,
of just family and friends that always helped me say
一個由一直以來支持我的親友組成,不斷地對我說
"I can" when I found myself facing an insurmountable challenge.
「我做得到」 當我發現自己面對一個無法克服的挑戰。
They were the people
他們是那些
that always worked on my gifts and helped me control my difficulties.
不斷琢磨我的天賦且幫助我控制我的困難的人。
She used my label "high-functioning autism"
她利用我被貼上「高功能自閉症」的標籤
to alert my primary and secondary teachers
去警醒我的小學一、二年級老師們
of a type of learning environment that would most enable me.
關於一種對我最佳的學習環境的樣貌是如何。
And with me,
而至於對我,
every film she made me watch, every book she made me read,
每本她要求我念的書、每部她要我看的影片,
had this "I can" enforced to it.
都有「我做的到」的觀念在裡頭,不斷加強。
My childhood was full of stories of children that have overcome adversity.
我的童年充滿了那些克服困境的孩子們的故事。
This was no dream for mom. I certainly was no picnic.
這不是一個媽媽的夢想。我當然也從沒有去野餐過。
I asked her recently just how bad did this get.
我最近問她這會有多糟。
That's a very dangerous question to ask your mom.
那是一個拿去問你媽會很危險的問題。
(Laughter)
(笑聲)
She said, "Well, Chris, there was your finger-painting."
她說,「這個嘛,克里斯,這是你的手指畫。」
And I thought, what was so different about my finger-painting?
而我想,我的手指畫有什麼特別的?
And she said, "Oh, Chris. You did finger painting with your own feces.
而她說,「喔,克里斯,你用你自己的排泄物做手指畫。」
(Gasps)
(斯~)
And I thought, "Whoa." I had that reaction.
而我想,"哇阿。" 我那時有這個反應。
I was like, "How did you survive me?!"
我像是想到,"你怎麼能夠受得了我?!"
Because the thing she never let me do was she never let me opt out of things.
因為她永遠不讓我做的一件事情就是她永遠不讓我選擇放棄、退出任何事情。
I never wanted to be social as a child,
我還小的時候我從不希望要跟人交際,
and she just refused to let me use autism as an excuse.
而她拒絕我用自閉症當做藉口這樣做。
I would pay down on her by throwing these tantrums,
我會因為發這種脾氣付出代價,
and it weren't just typical child tantrums,
而且不是一般孩子發脾氣的那種程度而已,
it would involve the whole household.
會搞得整個家天翻地覆。
One of them was so bad
我做的其中一件事情超壞
that simply to avoid throwing me through the window,
以致於她只差沒把我丟到窗外,
she picked up my school bag, and threw it across my bedroom,
她拿起我的書包,把它丟到我的寢室,
and it managed to go through my bedroom wall.
而她力量大到我以為她要丟穿我房間的牆壁。
And I shut up after that one.
從那之後我就閉嘴了。
(Laughter)
(笑聲)
When my family reached their exhaustion threshold,
當我的家人累積到了疲勞極限,
I would be sent to the refuge of my grandparents.
我就會被送到我祖父母那的避難所。
And my grandparents had this wonderful impact on me.
而我的祖父母對我而言有非常美妙的影響。
My grandmother researched exercises that would help me with my anxiety,
我的祖母研究關於如何紓緩我的焦慮的各種運動,
and I still use those exercises today.
到今天我仍然在做那些運動。
My grandfather knew
我祖父知道
that I would have a panic attack at the thought of playing social sports
我對於玩那些有關社交的運動的想法會激起我的恐慌症
like football and cricket with other children,
像是和其他孩子玩足球和板球等運動時,
and so he worked on my motor skills.
所以他教我如何騎腳踏車。
He taught me sports in private
他私下教我一些運動
and even though he was permanently in a wheelchair,
就算他的殘疾導致下半輩子永遠都要坐輪椅,
he used his mind and his humor
他也用他的心智和幽默
to enable me to feel confident in my own skin.
讓我對我自己感到自信。
At school, it would've been safe to call me "nine going on ninety".
在學校裡,
My brother, Steven, read Aladdin, and I read encyclopedias.
我的兄弟,史蒂芬,在讀阿拉丁神燈時,而我在讀百科全書。
I had this fascination with plotting the different royal families of Europe.
我對於歐洲不同皇室家族的繪畫感到神往。
I managed to do it from the 14th to 19th century.
我計畫要將14至19世紀的畫作都畫一遍。
(Laughter)
(笑聲)
I had distilled it down
我必須
into this incredibly visual and detailed chart.
去蕪存菁地製作這視覺上不可思議的和非常細膩的圖表。
When my grade 2 teacher, Miss Tey, set an assignment,
當我小學二年級的老師,泰伊小姐,給我們一分作業,
I matched this chart up to her
我將這份圖表交給她
because I just felt I have found a new way of seeing the last millennium.
只因為我感覺到我發現了一個新的方法看待、詮釋上一個千禧年。
No wonder we had so many revolutions and conflicts;
難怪我們會有那麼多的革命和衝突發生;
these families are way too connected, small community completely out of touch.
這些家族間彼此實在太親近,形成如此一個緊密的家族體,是外人完全無法觸及的。
(Laughter)
(笑聲)
(Applause)
(鼓掌)
When I took it up to Miss Tey she said,
當我拿著它去給泰伊小姐看,她說,
"Oh goodness, Chris, doesn't this chart look interesting?
「喔我的老天,克里斯,這個圖表看起來好有趣,對吧?
But darling, our assignment is on winter."
但是親愛的,我們的作業題目是關於冬天喔。」
(Laughter)
(笑聲)
"Would you mind drawing what winter looks like?"
「你介意畫畫看冬天的樣貌嗎?」
And I thought,
而我想,
I've just done a PhD on the whole last millennium,
我才剛拿到一整個過去千禧年的博士學位,
and you want me to draw clouds and rain?
而你確要我畫雲和雨?
(Laughter)
(笑聲)
That happened a lot to me at nine.
這種是經常發生在我九歲的時候。
I would also tell stories about family trees that were broken.
那時我也會訴說那些支離破碎的家族樹背後的故事。
When I was ten years old,
當我十歲那年,
and I was watching a midday movie at my grandparents house,
我在我祖父母的家看著午間影片,
the film "Gone With the Wind" came on,
看著電影《亂世佳人》,
and I couldn't cope with the fact
我不能接受
that the daughter of the two main characters, Bonnie,
邦妮,兩個主角的女兒
had died in that horrible horse riding accident.
死於可怕的騎馬意外的事實。
I thought, "What do you mean, the family tree's come to an end?
我想,「你說家族樹到了盡頭是什麼意思?」
There's no sequel?
沒有續集了嗎?
At ten, I'm going to have to continue that work.
10歲的我,我要故事繼續下去。
And so I actually published a sequel to "Gone With the Wind".
所以我真的出版了「跟隨著風」的續集。
I even threw in a sex scene,
我甚至加入了做愛的戲進去,
because that's what my autism in visual perception could do with sex ed.
因為那是我患了自閉症之後唯一能跟性教育扯上關係的畫面。
(Laughter)
(笑聲)
Raising me was also entertaining.
拉拔我長大是多麼有娛樂性質阿。
I was very lucky at school
我很幸運能在學校裡頭
to have the advantage of making some great loyal friends.
交到許多忠實的朋友。
At primary school, my friend, Erin could tell
在我的小學時光,我的朋友,艾林會告訴我
that my brain just absorbed every minor detail in class.
我的大腦會吸收課堂上每一個細節。
She would help me to focus on classwork, because I often wouldn't get good marks
她會幫助我專注在課堂作業上,因為我常常得很低分
because I'd trail off into minor things.
由於我會被細節給拉走。
She helped me focus.
她幫助我專注、聚焦。
When I was a teenager,
當我在青少年期時,
it was my friend, Tim, that helped me pick up social cues
是我的朋友,提姆,幫助我了解社交的脈絡、含意
so that I was less vulnerable to bullying.
我才盡量不會輕易遭受到罷凌。
Because, unfortunately, in Australia,
因為,不幸的是,在澳洲,
80% of secondary students with Asperger Syndrome
患有亞斯伯格症的二年級學生中
are targeted in schoolyard bullying.
有20%是校園罷凌的對象。
When school was over, and I lost the safety net of my routine,
一下課,我就失去了待在我自己宇宙的安全網,
because people on the spectrum love their routine,
因為我們這樣的人喜歡待在我們自己宇宙中,
my friend, Alana, helped me focus on getting uni right,
我的友人,艾蓮那,幫助我在大學中專注的學習,
on dealing with my anxiety,
幫助我處理我的焦慮,
and looking at campaigning, volunteering
也協助我以在競選、志工活動
and children's advocacy as a new focus for me.
和成為孩子們擁護者等等當做新的專注點。
One of my teachers was an extraordinary woman
我其中的一個老師是個非常傑出的女性
named Christine Horvath
她叫做克里斯盯.歐沃絲
who met me at 13 and