What it's really like to have autism | Ethan Lisi

譯者: Lilian Chiu 審譯者: H_L Au

Autism is something that many people know about.

許多人知道自閉症。

For example, some people think

比如，有些人認為

that autistic people are fair-skinned males

自閉症患者是皮膚白皙的男性，

that speak in monotone

說話聲音單調，

and constantly go on and on about the same topic.

經常會對同一個話題說個不停。

Some people think that autistic people do not know right from wrong,

有些人認為

自閉症患者無法分辨是非，

avoid attention

不想被注意到，

and usually say the wrong thing at the wrong time.

且通常會在錯的時機說出錯的話。

Some people think that autistic people are socially awkward

有些人認為

自閉症患者在社交上很笨拙，

and lack humor and empathy.

且缺乏幽默感和同理心。

Now if you agree with what I just said,

如果你認同我剛剛說的，

I'm sorry to tell you,

我很遺憾要告訴你

but you do not have the right impression of autism.

你對自閉症的印象並不正確。

How do I know?

我怎麼知道？

Because I have autism.

因為我有自閉症。

I do have my own obsessions with things like electronics

我的確會迷戀某些東西，

比如電子產品、大眾運輸工具，

and public transit,

but that does not define me.

但那無法定義我。

Each of us are different and unique in our own way.

我們每個人都是獨一無二的。

However, there is not a lot of information out there

然而，外面很少有相關資訊能協助

on what an autistic life actually looks like,

大家了解自閉症生活是什麼樣子，

so people often resort to stereotypes.

於是大家便會訴諸刻板印象。

And we see these often in the media.

我們常會在媒體上看到。

Some of the more common stereotypes in the media

媒體中更常見的一些刻板印象

include being socially awkward,

包括社交上很笨拙、

lacking empathy

缺乏同理心，

and even being a supergenius.

甚至超級聰明。

And the lack of knowledge on autism doesn't stop there either.

欠缺自閉症相關知識的情況不止於此。

Did you know that some people are trying to find a cure for autism?

你們知道嗎，有人還在 試圖尋找自閉症的解藥。

That's because they see it as a negative thing,

那是因為他們認為自閉症很負面，

as a disease.

是種疾病。

Many people are challenging the idea

許多人在挑戰那種想法。

and to us, we think autism is not a disease.

而對我們來說， 自閉症並不是種疾病，

It's just another way of thinking and looking at the world.

只是思考、看待世界的另一種方式。

Our brains function differently from most people's brains.

我們的大腦運作方式 和大部分的人不同。

Think of it like comparing and Xbox and a PlayStation.

可以把它想成是 Xbox 和 PlayStation 的差別。

They're both highly capable consoles with different programming.

它們是遊戲程式不同的 強大遊戲機。

But if you put your Xbox game in a PlayStation,

但把 Xbox 的遊戲 放到 PlayStation 的主機中

it won't work, because the PlayStation communicates differently.

就行不通，

因為 PlayStation 用不同的方式溝通。

When I look in the mirror,

當我看向鏡子時，

I see someone who thinks differently.

我看到的是個 用不同方式思考的人。

Oh, and I also see nice hair.

喔，我還有看到很棒的髮質。

(Laughter)

（笑聲）

(Applause)

（掌聲）

But the question is,

但問題是

am I really diseased if I just think differently?

若只是思考方式不同就真的有病嗎？

The main problem with living autistic in today's society

自閉症者在現今社會過日子 所面臨的最大問題

is that the world just isn't built for us.

在於這個世界不是為我們打造的。

There's so many ways that we can get overwhelmed.

有好多情況都會讓我們無法招架。

For example,

比如，

the thing that makes me overwhelmed all the time is loud noises,

總會讓我無法招架的是大聲的噪音，

which means I never crank up my music really loud

那就表示，我聽音樂時 絕對不會把音量調高，

and I usually am not a fan of large parties.

且我通常不喜歡去大型派對。

But other people on the spectrum might get overwhelmed

但光譜上的其他人可能無法招架

with things like bright lights or strong smells

亮光、強烈的氣味

or gooey textures

或膠黏的質感，

that all have the potential to create anxiety.

這些都有可能會造成焦慮。

Think about all of the social gatherings you've been to in the past.

想想看你們在過去 曾經去過的社交聚會。

Was there loud music playing?

現場的音樂很大聲嗎？

Were there really bright lights?

現場的光很亮嗎？

Were there lots of different food smells going on at the same time?

現場有很多不同的 食物味道同時出現嗎？

Were there lots of conversations happening all at once?

現場有很多人同時在交談嗎？

Those things may not have bothered you guys,

你們可能不在意上述這些狀況，

but for someone with autism,

但有自閉症的人

they can be quite overwhelming.

就會覺得無法招架。

So in those situations, we do something called stimming,

所以在那些情況下 我們會「重複自我刺激」，

which is like a repetitive motion or a noise

做重覆的動作、發出重覆的聲音，

or some other random fidgeting that may or may not seem normal.

或呈現其他各種坐立不安的樣子，

未必全都看起來正常。

Some people will flap their arms

有些人會拍打手臂，

or make a noise or spin.

或發出噪音或旋轉。

Ya, it's basically our way of zoning out.

基本上，這就是 我們轉移注意力的方式。

It can often feel necessary for us to stim.

我們通常會覺得需要重複自我刺激。

However, it's often frowned upon,

然而，別人看到通常會皺眉，

and we're forced to hide it.

我們被迫偷偷地做。

When we're forced to hide our autistic traits like this,

我們被迫隱藏這種自閉症特性，

it's called masking.

稱為「利用感覺遮蔽」。

And some people mask better than others.

有些人比較擅長遮蔽。

I mask so well sometimes that people don't even know I'm autistic

有時我遮蔽得非常好，

外人甚至不知道我有自閉症，

until I give them the big reveal. (Laughs)

直到我向他們揭示。（笑）

But at the end of the day, it gets really stressful.

但到頭來感覺很有壓力。

Even something like doing my homework at night

就連在晚上做功課這種事情，

becomes very tiring.

也變得讓人疲憊。

Some people think,

有些人認為，

because of our ability to mask,

因為我們有遮蔽的能力，

that this is the cure to autism.

這就是自閉症的解藥。

However, all it really does is makes us ashamed

然而，這麼做只是讓我們覺得

of showing our true selves.

展現真實的自己是件羞恥的事。

Another common stereotype that is often associated with autism

另一種常見的自閉症刻板印象

is that autistic people lack empathy.

就是自閉症患者缺乏同理心。

And again, this is not true.

這也不是真的。

I actually have lots of empathy.

我其實很有同理心。

I'm just not really good at showing it.

我只是不善於表現出來。

Whenever a friend is trying to tell me

每當有朋友試著告訴我

some of the struggles that they're going through,

他們在經歷的一些困難，

I often don't know how to express my reply.

我通常會不知道該如何做回應。

And that is why I don't show as much empathy

那就是為什麼我無法像 沒有自閉症的朋友那樣

as my nonautistic friends do.

展現很多同理心。

Emotional expression, however much or however little,

要表達情緒，或輕或微，

is difficult for me.

對我而言都很難。

And that is because I am bursting inside

這是因為我內在滿是

with every single emotion one feels at all times.

人們經常感受到的每一種情緒，

Though of course, I cannot express it that way.

儘管我無法像常人那樣表達。

Otherwise, let's say, happiness, for example,

要不然，以快樂為例，

would come out as a huge burst of gleeful wheezing,

呈現出來的方式會是 爆出歡愉的大聲喘息，

hand flapping and loud vocal "woohoos."

揮手再加上大聲喊「嗚呼」。

(Laughter)

（笑聲）

Whereas you may just smile.

而各位可能只會用微笑呈現。

(Laughter)

（笑聲）

Whether it be receiving an awesome birthday gift

不論是收到很棒的生日禮物

or listening to a tragic story on the news,

或聽到新聞報導悲傷的故事，

I cannot really express my reply without bursting,

我都無法不用爆出來的方式 來表達我的反應，

so once again, I have to mask it in order to appear normal.

所以，我也得遮蔽它， 才能顯得正常。

My inner feelings are unlimited,

我內在的感受是不受限的，

but my mind only lets me express extremes or nothing.

但我的大腦只讓我用極端方式 表達，要不然就是不表達。

So my ...

所以我的……

I am not great with my emotions,

我不擅長處理情緒，

and I communicate differently,

且我的溝通方式不同，

and because of that, I was diagnosed with autism spectrum disorder.

因此，我被診斷出 自閉症類群障礙。

This diagnosis helps me and my friends and family

這個診斷協助我、我的朋友及家人

to know how my mind works.

了解我的大腦如何運作。

And in the world,

全世界，

approximately one percent of the population

有大約 1% 的人口

is diagnosed with autism spectrum disorder.

被診斷出有自閉症類群障礙。

And this number is growing.

這個數字在增加中。

However, we are still a big minority.

然而，我們仍然是個 很大的少數族群。

And there's still lots of people that do not see us as equals

還是有很多人並沒有把我們視為

to other people.

和他人平等的人。

This is my family.

這是我的家人。

And in my family,

在我家，

there is one other person who is also autistic.

還有一個人也有自閉症。

My mother.

我媽媽。

Yes, adult women can also be autistic.

是的，成人女性也會有自閉症。

My dad and my brother are both nonautistic.

我爸爸和我兄弟都沒有自閉症。

Sometimes it can be a bit difficult for us to communicate with each other,

然而，有時我們彼此間

溝通也不容易。

however.

Sometimes I'll say something like,

有時我會說，比如：

"Oh, Toronto's Union Station, right?"

「喔，多倫多的 聯合車站，對吧？」

thinking that I can

我想我可以

help them to remember certain aspects of it.

協助他們想起它的某些面向。

When they get confused, I often have to elaborate myself on that.

一旦他們困惑不解， 我常得要補充解釋。

And we often have to say things

我們常得用許多不同的方式闡述，

in a number of different ways so that everyone understands.

讓大家都聽得懂。

However, despite all that,

然而，儘管如此，

we all love each other and respect each other as equals.

我們都很愛彼此， 且平等看待、尊敬彼此。

In his book "NeuroTribes,"

在《自閉群像》這本書中，

author Steve Silberman states that autism and other mental conditions

作者史提夫 · 希伯曼指出

自閉症和其他心理疾病

should be seen as naturally human,

應該被視為是人類很自然的特性，

naturally part of a human spectrum

是人類光譜中很自然的一部分，

and not as defects.

而不是缺陷。

And this is something that I agree to completely.

我完全同意這一點。

If autism was seen as part of a natural human spectrum,

如果自閉症被視為是 人類光譜中很自然的一部分，

then the world could be designed to work better for autistic people.

接著，世界運作方式就能被

設計成更適合自閉症患者。

I am not ashamed of my autism.

我並不以自閉症為恥。

And I may not think like you,

我可能和你們有不同的思考方式、

or act like you,

不同的行為，

but I am still human and I am not diseased.

但我仍然是人，我沒有生病。

Thank you.

謝謝。

(Applause)

（掌聲）