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

翻译人员: Ethan Huang 校对人员: Wanting Zhong

Autism is something that many people know about.

很多人都听说过自闭症。

For example, some people think

举个例子，有的人认为

that autistic people are fair-skinned males

自闭症人士是白人男性，

that speak in monotone

说话声音单调，

and constantly go on and on about the same topic.

并且会对同一个话题说个不停。

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

有些人则认为自闭症人士 无法分辨对错，

avoid attention

不喜欢被人注意，

and usually say the wrong thing at the wrong time.

并经常在错误的时间 说错误的话。

Some people think that autistic people are socially awkward

还有些人觉得自闭症人士在 社交上表现笨拙，

and lack humor and empathy.

并缺乏幽默感和同理心。

Now if you agree with what I just said,

如果你们同意我刚才所说的，

I'm sorry to tell you,

那我很抱歉地告诉你们，

but you do not have the right impression of autism.

你们对自闭症的印象并不正确。

How do I know?

我是怎么知道的呢？

Because I have autism.

因为我就有自闭症。

I do have my own obsessions with things like electronics

我的确对电子产品

和公共交通非常着迷，

and public transit,

but that does not define me.

但这并不能定义我是怎样的人。

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

我们每一个人都有自己的 不同与独特之处。

However, there is not a lot of information out there

但是世界上并没有多少

on what an autistic life actually looks like,

关于自闭症人群 真实生活的信息。

so people often resort to stereotypes.

于是人们通常会 诉诸刻板印象。

And we see these often in the media.

我们在媒体里常常 看到这些刻板印象。

Some of the more common stereotypes in the media

一些在媒体里更常见的刻板印象

include being socially awkward,

包括社交障碍，

lacking empathy

缺乏同理心，

and even being a supergenius.

甚至超级天才。

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

对于自闭症的认识缺乏 还不仅限于此。

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

你们知道有些人正在为 自闭症寻找治疗办法吗？

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

这是因为他们觉得 自闭症是不好的，

as a disease.

是一种疾病。

Many people are challenging the idea

很多人在驳斥这种观点，

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

对于我们来说，我们认为 自闭症不是一种疾病。

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

它只不过是另一种 思考与看待世界的方式。

Our brains function differently from most people's brains.

我们大脑的运行方式同 大多数人不同。

Think of it like comparing and Xbox and a PlayStation.

这就好比把 Xbox 和 PlayStation 拿来对比一样。

They're both highly capable consoles with different programming.

两者都是性能出众的主机， 有着不同的程序。

But if you put your Xbox game in a PlayStation,

但是如果你把 Xbox 的游戏 放在 PlayStation 里面，

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

它不会顺利运行，因为 PlayStation 的读取方式和 Xbox 不同。

When I look in the mirror,

当我看向镜子的时候，

I see someone who thinks differently.

我会看到一个 思维方式不同的人，

Oh, and I also see nice hair.

噢，还有好看的头发。

(Laughter)

（笑声）

(Applause)

（掌声）

But the question is,

但是问题在于，

am I really diseased if I just think differently?

如果只是思维方式异于常人， 那我真的患有疾病吗？

The main problem with living autistic in today's society

自闭症人群在现代社会里 生活的最大问题是，

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

这个世界的运行方式 对我们不适用。

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

世界上有太多的事情 能让我们无所适从。

For example,

举个例子来说，

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

我一直难以应付的东西 是巨大的声响，

which means I never crank up my music really loud

这意味着我从来不把 音乐声音开得很大，

and I usually am not a fan of large parties.

我也不喜欢参加大型派对。

But other people on the spectrum might get overwhelmed

但是其他有自闭症谱系 障碍的人可能会因为

with things like bright lights or strong smells

强光或者浓烈的味道

or gooey textures

或者黏糊糊的质感 而感到难以忍受，

that all have the potential to create anxiety.

这些东西都可能 给我们制造焦虑。

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

想想你们过去参加过的 所有社交聚会。

Was there loud music playing?

那里是不是放着很大声的音乐？

Were there really bright lights?

是不是有着很刺眼的灯光？

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

是不是同时弥漫着 很多种不同食物的味道？

Were there lots of conversations happening all at once?

是不是有很多人在同时进行对话？

Those things may not have bothered you guys,

这些事可能不会让你们觉得困扰，

but for someone with autism,

但是对于有自闭症的人来说，

they can be quite overwhelming.

它们能让人觉得不堪重负。

So in those situations, we do something called stimming,

所以在这种情况下，我们会做出 自我刺激的行为（stimming），

which is like a repetitive motion or a noise

比如做出反复的动作或声音， 又或是其他无意义的小动作，

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

看上去可能正常，也可能不正常。

Some people will flap their arms

有些人会挥动手臂，

or make a noise or spin.

或是发出吵声， 或是旋转物品。

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

没错，这基本就是我们 走神时的表现。

It can often feel necessary for us to stim.

我们常常觉得 有必要进行自我刺激。

However, it's often frowned upon,

但是，这种行为 常常令他人不悦，

and we're forced to hide it.

于是我们被迫隐藏这种行为。

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

当我们被迫隐藏 类似的自闭症状时，

it's called masking.

我们在进行伪装（masking）。

And some people mask better than others.

有的人比其他人隐藏得好。

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

我有时隐藏得相当好，以至于 别人甚至不知道我有自闭症，

until I give them the big reveal. (Laughs)

直到我为他们揭开谜底。（笑声）

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

但是不管怎么说， 这样的伪装会带来巨大压力。

Even something like doing my homework at night

甚至晚上做作业之类的事情

becomes very tiring.

都会变得非常令人疲倦。

Some people think,

有些人会想，

because of our ability to mask,

因为我们有能力进行伪装，

that this is the cure to autism.

这就是治愈自闭症的办法。

However, all it really does is makes us ashamed

但是，这样的伪装只会让我们

of showing our true selves.

羞于展现真正的自我。

Another common stereotype that is often associated with autism

另一个常常和自闭症 联系在一起的刻板印象是，

is that autistic people lack empathy.

自闭症人群缺乏同理心。

And again, this is not true.

同样的，这也不是真相。

I actually have lots of empathy.

我其实富有同理心。

I'm just not really good at showing it.

我只是不擅长表现出来。

Whenever a friend is trying to tell me

每当朋友尝试告诉我

some of the struggles that they're going through,

他们正经历的一些挣扎时，

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

我通常都不知道 如何表达我的回应。

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

这就是为什么和我 没有自闭症的朋友相比，

as my nonautistic friends do.

我没有表现出 同等程度的同理心。

Emotional expression, however much or however little,

情感上的表达， 不论多少，

对我来说都很困难。

is difficult for me.

And that is because I am bursting inside

这是因为无论何时 我感受到的任何情感，

with every single emotion one feels at all times.

在心中都如同爆炸一样强烈。

Though of course, I cannot express it that way.

虽说当然了，我无法 那样强烈地表达出来。

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

否则的话，以快乐为例， 快乐会剧烈地爆发出来，

would come out as a huge burst of gleeful wheezing,

我会兴奋地喘气，

hand flapping and loud vocal "woohoos."

手舞足蹈，并大声高呼“哇吼！”

(Laughter)

（笑声）

Whereas you may just smile.

而换作你的话， 可能只是个微笑。

(Laughter)

（笑声）

Whether it be receiving an awesome birthday gift

不管是收到非常棒的生日礼物，

or listening to a tragic story on the news,

还是听到新闻里面悲剧的故事，

I cannot really express my reply without bursting,

我真的没办法在情感不爆发 的情况下表达回应，

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

所以为了表现正常， 我不得不再次进行掩饰。

My inner feelings are unlimited,

我内心有无限的情感，

but my mind only lets me express extremes or nothing.

但我的头脑只能让我 极端爆发，抑或毫无波动。

So my ...

所以我……

I am not great with my emotions,

我不擅长表达情感，

and I communicate differently,

我沟通的方式也不一样，

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

因为这些，我被诊断 有自闭症谱系障碍。

This diagnosis helps me and my friends and family

这次诊断让我、 我朋友和家人

to know how my mind works.

了解了我思维的运转方式。

And in the world,

世界上，

approximately one percent of the population

大概 1% 的人口

is diagnosed with autism spectrum disorder.

被诊断有自闭症谱系障碍。

And this number is growing.

同时这个数字还在增加。

However, we are still a big minority.

但是，我们依然是一个 大型的少数群体。

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

现在还有很多人 不把我们视为

to other people.

和他人平等的人。

This is my family.

这是我的家人。

And in my family,

在我的家庭中，

there is one other person who is also autistic.

还有另一位有自闭症的人。

My mother.

我的妈妈。

Yes, adult women can also be autistic.

是的，成年女性也可能有自闭症。

My dad and my brother are both nonautistic.

我的爸爸和兄弟都没有自闭症。

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

有时候，我们几个人 互相沟通会有些困难，

however.

但是，

Sometimes I'll say something like,

有时候我会说类似

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

“噢，多伦多联合车站，是吗？” 这样的话，

thinking that I can

因为我认为这样能

help them to remember certain aspects of it.

帮助他们想起 车站的某些方面。

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

当他们感到困惑时，我经常 不得不对其进行详细阐述。

And we often have to say things

我们也经常不得不 用多种不同方式说明，

in a number of different ways so that everyone understands.

以便所有人理解。

However, despite all that,

但是，尽管这样，

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

我们都很爱彼此， 并且平等地尊重对方。

In his book "NeuroTribes,"

在《神经部落》一书中，

author Steve Silberman states that autism and other mental conditions

作者史蒂夫 · 希波曼声称， 自闭症和其它精神状况

should be seen as naturally human,

都应被看作人类的自然特性，

naturally part of a human spectrum

都是人类谱系中的正常部分，

and not as defects.

而不应被视为缺陷。

And this is something that I agree to completely.

这一点我是完全同意的。

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

如果自闭症人群被视为 正常人类谱系中的一部分，

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

那么这个世界就可以被设计得 对自闭症人群更加友好。

I am not ashamed of my autism.

我并不因为有自闭症 而感到羞耻。

And I may not think like you,

我可能和你们的思考方式不同，

or act like you,

行为举止不同，

but I am still human and I am not diseased.

但我仍是人类， 我也没有患病。

Thank you.

谢谢。

(Applause)

（掌声）