Why Autism Is Often Missed in Women and Girls | Kate Kahle | TED

翻译人员: danni jin 校对人员: suya f.

As a young woman, I've had some pretty cool opportunities.

做为一名年轻女性， 我有过一些非常酷的机会。

One that I'm most proud of

我最自豪的一件事

is having my art displayed at the DMA before I turned 17.

是在我 17 岁之前，我的作品 在达拉斯艺术博物馆(DMA)展出。

When I was in the auditorium with all the other young artists

当我和所有其他年轻 艺术家一起在礼堂里

being honored for our achievements,

因为我们的成就而受到表彰时，

I couldn't think of how proud I was of myself.

我没有在想我有多么为自己感到自豪。

All I could think about was the velvet upholstery of the chairs

我所想到的是 椅子上的天鹅绒软垫

touching the back of my arms and legs.

触及了我的胳膊和腿。

For me, the sensation of touching velvet is unbearable.

对于我来说，天鹅绒 的触感是无法忍受的。

You may be thinking, "I don't like certain textures either,"

你可能在想， “我也不喜欢 某些质地的东西“，

but there's more to this story you need to know.

但这个故事还有 更多你需要知道的内容。

I’m Kate Kahle. I’m 20 years old, and I’m autistic.

我叫凯特·卡勒。

我今年20岁，是个自闭症患者。

When I was a freshman in high school,

当我还在高中一年级的时候，

my family noticed that I was having difficulty connecting with my peers.

我的家人注意到 我很难与同龄人建立联系。

I had also developed severe anxiety, and it showed up in unexpected ways.

我也患上了严重的焦虑症， 并且它以意想不到的方式表现出来。

I had always had autistic traits and struggles,

我一直有自闭症的特征和困难，

but I just thought I was weird.

但我一直只认为我很奇怪。

My parents took me in for an evaluation where we learned I was autistic.

我的父母带我去做了个评估， 在那里我们得知我是自闭症患者。

We were all shocked

我们都很震惊，

because I'm not what people would typically think of

因为我不是人们通常所认为的

as an autistic person.

自闭症患者。

Autism is diagnosed

自闭症的诊断为

when social expectations for neurotypical behavior

当社会对神经型行为的期望值

begin to outweigh the person's ability to perform those behaviors.

开始超过这个人 执行这些行为的能力。

Autism spectrum disorder, or ASD,

自闭症谱系障碍，即ASD，

is a lifelong developmental disability

是一种终身性的发育障碍

that can cause deficits in communication,

这可能会导致交流，

social interaction, emotional awareness,

社会互动和情感意识方面的缺陷，

and it can cause sensory issues among other symptoms.

而且还可能会引起 感官问题和其他的症状。

The reason it's lifelong is that autism is not a disease and it can't be cured.

之所以是终身的是因为自闭症 不是一种疾病，它无法被治愈。

It's a neurodivergency,

这是一种神经性失调，

which means that the autistic brain

这意味着自闭症患者大脑的

works differently than the neurotypical brain.

工作方式与神经类型的大脑不同。

No one is sure why some people have autism.

没有人知道为什么有些人患有自闭症。

One of the criteria for diagnosis is that symptoms must be present

诊断的标准之一是症状必须存在

from birth or early childhood,

在出生时或儿童早期，

which means that it's not caused by poor diet, bad parenting,

这表明它不是由饮食不当， 不良的养育方式，

vaccinations, and it's not contagious.

或接种疫苗所引起的， 而且它不具有传染性。

Evidence has shown that autism can be passed down genetically,

有证据表明，自闭症具有遗传性，

which means it may run in families.

这表明它可能会在家族中流传。

I found that a lot of neurotypical people, and even some autistic people,

我发现很多神经正常的人， 甚至一些自闭症患者，

struggle with the concept of the autism spectrum.

纠结于自闭症谱系的概念。

This is partially because I think it's poorly named,

我认为这部分的名字很不好，

but also partly because

但也有一部分原因是

the way that experts and researchers think about autism

随着专家和研究人员的深入研究，

is changing all the time as they do more research.

他们对自闭症的思考方式也一直在变化。

In the past, autism had three categories:

过去，自闭症有三类：

mild, moderate and severe.

轻度，中度和重度。

Later, it was thought of more as a continuum like this,

后来，人们认为它更像是一个连续体，

from high-functioning to low-functioning,

就像这样从高功能型到低功能型，

with high-functioning also being called Asperger's syndrome.

高功能的也被称为阿斯伯格综合症。

You may think that as long as a person experiences the same symptoms,

可能你认为只要一个人 经历了相同的症状，

what you call their disorder doesn't matter.

怎么称呼他们的病症并不重要。

Here's why I don't prefer the term "Asperger's syndrome."

这就是为什么我不喜欢 “阿斯伯格综合症 “这个词。

Hans Asperger was a medical doctor and early researcher on autistic kids

汉斯-阿斯伯格是一名医生， 也是自闭症儿童的早期研究者

who he called "autistic psychopaths."

他称这些人是 “自闭症精神病人 ”。

He believed in eugenics,

他相信优生学，

and he sent many of the kids that he worked with

他把许多和他一起工作的孩子

to the Third Reich's child euthanasia and sterilization programs.

送到第三帝国的儿童 安乐死和绝育计划中。

While not the Nazis' main targets, autistic people were considered a threat

虽然不是纳粹的主要目标，

但自闭症患者被认为是对第三帝国 建立纯正基因社会目标的威胁。

to the Third Reich goal of a genetically pure society.

When people use the term "Asperger's syndrome,"

当人们使用 “阿斯伯格 综合症 “这一术语时，

they're unknowingly reinforcing the idea

他们会在不知不觉中强化

that autistic people have no value to society.

自闭症患者对社会没有价值的想法。

This is why I prefer my disorder be referred to as autism spectrum disorder

这就是为什么我倾向于我 的疾病被称为自闭症谱系障碍

or autism instead of Asperger's syndrome.

或自闭症，而不是阿斯伯格综合症。

现在的谱系被认为更像是这样的。

Nowadays the spectrum is thought of more like this.

This shows some of the struggles that autistic people can have

这展示了自闭症患者可能会面临一些困难

and the varying degrees to which each person can struggle

以及每个人在处理这些特定问题时

with those particular issues.

可能遇到的不同程度的挑战。

Autism can have many symptoms and may vary widely from person to person.

自闭症可以有很多症状， 而且可能因人而异差别很大。

Some symptoms you might think of when you think of autism

当你想到自闭症时， 你可能会想到的一些症状是

are struggling to make eye contact, poor communication,

难以与人进行眼神交流，沟通困难，

sensory issues and obsessing over special interests.

感官问题以及对特定兴趣的痴迷。

But there are also a lot of other symptoms you might never have thought of before,

但也有很多你以前可能 从未想过的其他症状，

like heightened emotions,

例如情绪高涨，

making too much eye contact or high affective empathy.

过多的眼神交流或高度的情感共鸣。

A lot of these less commonly thought of symptoms

很多这些不常被想到的症状

are more common in women and girls with autism.

在女性和女孩自闭症患者中更为常见。

Here you can see a spectrum

这里你可以看到我填写的谱系

that I filled out to reflect my experiences.

来反映我的经验。

As you can see,

正如你所看到的，

I have lots of sensory issues with textures and sounds,

我有很多关于质地和声音的感官问题，

I focus a lot on my special interests,

我非常注重自己的特定兴趣，

and I have high affective empathy

而且我有很高的情感共鸣能力

which allows me to easily communicate with others.

这使我能够很容易地与他人沟通。

After the initial shock of my diagnosis, it began to make a lot of sense.

在最初对我的诊断感到震惊之后， 一切开始变的合理了许多。

I finally realized why I had struggled

我终于意识到为什么我很难

to pick up on other people's negative emotions,

察觉到别人的负面情绪，

like when they're sad or frustrated.

比如当他们悲伤或沮丧的时候。

This affected my relationships for the first 15 years of my life.

这影响了我人生中前15年的人际关系。

I'm very grateful for my diagnosis

我非常感谢我的诊断，

because it allowed me to understand and accept myself,

因为它使我能够理解和接受自己，

and I was very lucky to get it.

我很幸运能得到它。

For every four boys diagnosed with autism, only one girl is diagnosed.

当每四个男孩被诊断出患有自闭症时， 只有一个女孩会被诊断出患有自闭症。

Studies that have followed children since birth show

从出生起就对儿童进行追踪的研究表明

that the natural ratio of males to females with autism is closer to three to one.

患有自闭症的男性和女性 的自然比例接近三比一。

The discrepancy between this diagnostic rate

这种诊断率与

and the actual rate of autism between males and females

实际男女自闭症比例的差异

is likely due to the way autism has been defined and studied

可能是由于自闭症的定义和研究方式

and the tests used to diagnose it.

以及用于诊断的测试不同所造成的。

The tests used to diagnose autism

用来诊断自闭症的测试

are still based on studies done on white autistic boys,

仍然是基于对白人自闭症男孩的研究，

which likely leads to lower and misdiagnosis in women.

这很可能导致对女性 的诊断率降低和误诊。

I would like to add that this is not only an issue for women, but also minorities.

我想补充的是这不仅是关于妇女的问题， 也是关于少数民族的问题。

White children are 19 percent more likely than Black children

白人儿童自闭症诊断 比黑人儿童多出19%的可能性

and 65 percent more likely than Hispanic children to receive an autism diagnosis.

与西班牙裔儿童相比高出65%。

Males who outwardly display mild symptoms of autism

外表表现出轻度自闭症症状的男性

are diagnosed on average two years earlier than women who display similar symptoms.

比有类似症状的女性 平均早两年被诊断出来。

This might be because female special interests

这可能是因为女性的特定兴趣

are generally more socially accepted than male special interests.

通常比男性的特定 兴趣更容易被社会接受。

When nonautistic people think about autism special interest,

当非自闭症患者想到 自闭症患者的特殊兴趣时，

the thing that usually comes to mind is trains.

通常会想到的是火车。

I've never had any interest in trains.

我对火车从来没有任何兴趣。

When I was a kid, my special interest was in insects.

当我还是个孩子的时候， 我特别感兴趣的是昆虫。

The people in my life saw this

在我身边的人看来

as just a healthy interest in the sciences,

这只是对科学的健康兴趣，

and it was never really flagged as an autistic trait.

而且从来没有人把它 当作自闭症的特征来看待。

While my special interests

虽然我的特定兴趣

were an autistic trait that was largely ignored,

在很大程度上被忽略 是一个自闭症的特征，

my other autistic traits were hidden because I was skilled at masking them.

但我的其他自闭症症状被隐藏了， 因为我善于掩饰它们。

Masking is a behavior by which autistic people try to camouflage

掩饰是一种行为，自闭症患者 试图通过这种行为来伪装

and seem like they're not autistic.

使自己看起来像没有自闭症。

Hearing this for the first time,

第一次听到这种说法，

neurotypical people might think that autistic people are insecure

神经正常的人可能会认为 自闭症患者试图掩藏症状

or manipulative for trying to hide our symptoms.

是因为没有安全感或者试图操纵别人。

This isn't true.

这是不对的。

The real reason an autistic person would mask

自闭症患者会有掩饰行为的真正原因

is because of a natural human desire to fit in, connect with others

是因为人类有一种自然的欲望 想要融入社会，与他人建立联系

and achieve social and professional success.

并取得在社会和职业上的成功。

Masking behaviors can include forcing eye contact,

掩饰行为可以包括强迫性的眼神交流，

mimicking others’ behaviors, expressions and gestures

模仿他人的行为，表情和手势

and even memorizing scripts for small talk and common conversations.

甚至背诵小型谈话和普通对话的文稿。

Some people are more skilled at masking than others.

有些人在掩饰方面比其他人更熟练。

I'm really good at masking and people tell me that all the time,

我真的很擅长掩饰， 人们总是这样告诉我，

whether they know it or not.

无论他们是否知道。

When someone says to me

当有人对我说

that they never would have known I was autistic if I hadn't told them,

如果我不告诉他们，他们永远 不会知道我是自闭症患者，

or even that I don't seem autistic,

甚至说我看起来并不自闭，

what they're really telling me is that I'm good at masking.

他们真正要告诉我的是我很擅长掩饰。

A lot of people see this as a really positive thing.

很多人认为这是一件非常积极的事情。

It's something that allows me to live a "normal" life.

它使我能够过上 “正常 “的生活。

And while it's true that some things can be easier

虽然当人们看不出你是自闭症患者时

when people can't tell you're autistic,

有些事情确实可以更容易一些，

it's impossible for a person with ASD to not be heavily affected by it.

但患有ASD的人不可能 不受到严重影响。

Autism is a part of us.

自闭症是我们的一部分。

It colors the way we think,

它给我们的思维方式，

interact with others and see the world throughout our life.

与他人互动以及在我们一生中 看待世界的方式增添了色彩。

This isn't something that can be turned off with masking.

这不是可以通过屏蔽来关闭的东西。

It simply gets pushed down to a level below that

它只是被压低到低于

at which other people can see it.

其他人可以看到的水平。

This pushing down of our true self takes a lot of work.

这种对真实自我的压制需要大量的工作。

Think about this.

考虑一下这个问题。

When you're having a conversation with somebody,

当你和别人谈话的时候，

you're doing a lot of things at once.

同时在做很多事情。

You have the correct posture and the right distance away from them.

你有正确的姿态并与 他们保持适当的距离。

You're using the right facial expressions. You're modulating your tone.

你使用了正确的面部表情。 你在调节你的语调。

You might be gesturing.

你可能会做手势。

You're making the right amount of eye contact.

你会进行适量的眼神交流。

You're not not looking them in the eyes,

你并没有在直视他们的眼睛，

but you're not looking them in the eyes so much that it's creepy.

但也不至于看得太少 以至于让人觉得怪异。

(Laughter)

（笑）

And you're predicting

而你在预测

what the other person is going to say and do next.

另一个人接下来会说什么和做什么。

For neurotypical people, all of these things come naturally.

对于神经正常的人来说， 所有这些事情都是自然而然地发生。

You guys don't even have to think about them.

你们甚至不需要思考。

But for me, I have to think about all those things at once.

但对我来说，我必须 同时考虑到所有的事情。

Over the years, I've learned how to juggle all of these things,

多年来，我已经学会了 如何处理所有这些事情，

but it's a Herculean task,

但这是一项艰巨的任务，

and for some its complexity makes it impossible.

而对一些人来说， 其复杂性使其无法实现。

The difficulty of masking can often lead to secondary mental health challenges.

掩饰的困难往往会 导致二次心理健康挑战。

Depression can stem from working so hard and still not being accepted,

抑郁症可能源于非常努力 地工作但仍然不被接受，

while anxiety can come from the stress

而焦虑可能来自于

of having to mask for a good portion of the day,

每天很大一部分时间都要戴面具的压力，

every single day, for a good portion of your life,

在你生活的大部分时间里， 每一天都是如此，

or risk being discriminated against and ostracized.

否则就有可能被歧视和排斥。

These secondary mental health challenges

这些二次的心理健康挑战

are of particular issue for women and girls.

对女性和女孩来说是个特别的问题。

34 percent of women with autism have depression,

34%的女性自闭症患者有抑郁症，

and 36 percent have anxiety.

并且36%的人有焦虑症。

While these secondary mental health challenges are a big issue,

虽然这些二次心理 健康挑战是一个大问题，

the biggest problem masking causes for autistic people

但对自闭症患者来说 掩盖症状造成的最大问题

is late and misdiagnoses.

是延迟的诊断和误诊。

If someone is really good at masking, they may never be diagnosed at all.

如果有人真的擅长掩饰， 他们可能根本就不会被诊断出来。

Men and children are the group seen to be least skilled at masking,

男子和儿童是被认为 最不擅长掩饰的群体，

and they're also the groups diagnosed with autism spectrum disorder most often.

并且他们也是最经常被诊断 为自闭症谱系障碍的群体。

Case studies show that women are more skilled at masking,

案例研究表明，女性更善于掩饰，

and this is likely a huge factor

而这可能是一个巨大的因素

that contributes to their late and misdiagnoses.

导致了她们被延迟和误诊。

The earlier a person is diagnosed with autism,

越早被诊断出患有自闭症，

the earlier they can receive specialized care and treatment

就能越早得到专门的护理和治疗

that can help them in almost every aspect of their life.

这可以帮助他们在生活 的几乎每个方面都得到改善。

Care for autistic people gets better all the time

随着更多研究的深入，

as more research is done,

对自闭症患者的护理也一直在改善，

but unfortunately, it's rare to find a therapist

但不幸的是，很少能找到一个治疗师

or other people who assist autistic people

或其他帮助自闭症患者的人

that recognize the extra challenges that come with being a woman.

认识到作为女性所面临的额外挑战。

When you struggle socially as a female,

当你作为一名女性在社会上努力奋斗时，

learning to succeed socially as a male just isn't enough.

学习作为男性在社会上 取得成功是不够的。

Womanhood is a unique and challenging experience all its own.

女性的身份是一种独特 且具有挑战性的经验。

The rules of female friendship, how to talk about romance, menstruation

女性友谊的规则，如何谈论浪漫，经期

and even how to stay safe from sexual predators

甚至是如何远离性侵犯者的安全

are all obstacles that autistic women face but do not receive support for.

这些都是自闭症女性 面临的障碍，但没有得到支持。

While it's tempting in our society to say that gender is something small,

虽然在我们的社会中， 人们想说性别是小事，

obsolete or insignificant,

是过时的或无足轻重的东西，

the truth is gender does matter.

但事实是性别确实很重要。

And when it comes to autism, it matters a lot.

而当涉及到自闭症时，这一点非常重要。

The difference comes in

区别来自于

with the vast disconnect between the lived experiences of men and women.

男性和女性在生活经验 之间存在着巨大的差距。

All autistic people are born autistic,

所有自闭症患者都是天生的，

but from birth, girls are thrust into a more socially rigorous environment

但从出生起，女孩就被推入 一个更加严格的社会环境中

that increases the pressure to mask

这增加了自闭症患者掩饰的压力

and the challenges an autistic person faces daily.

以及每天所面临的挑战。

For any autistic person, but especially women and girls,

对于任何自闭症患者， 特别是女性和女孩，

the part of their autism you can see

你所能看到的她们自闭症的部分

is not what that person is actually experiencing.

并不是这个人的实际经历。

It's impossible for someone with a limited outside perspective

对于一个外部视角有限的人来说，

to label someone else's autism,

是不可能给别人的自闭症贴上标签，

be that label "mild," "moderate," "Asperger's," "high-functioning,"

无论是 “轻度“、”中度“、 “阿斯伯格“，”高功能“，

or any other label.

或任何其他标签。

You can see me up here right now talking to you

你可以看到我现在站在这里和你说话

and try to label me to differentiate me in your mind from another autistic person

并试图给我自己贴上标签， 以便在你的脑海中

you may have met,

将我与其他自闭症患者区分开来，

such as maybe a little boy having a sensory meltdown in the mall.

例如可能是一个在商场里 感觉崩溃的小男孩。

You can try to label me in your mind to differentiate us,

你可以尝试在你的头脑中 给我贴上标签以区分我们，

but the feelings that we're having on the inside

但我们内心的感受

are probably more similar than you would think.

可能比你想象的还要相似。

I've just learned to mask them after years of pressure and practice.

经过多年的压力和实践， 我刚刚学会了掩饰。

This is partially because what society expects of a grown woman

这是因为社会对一个成年女性的期望

is different than what they expect from a little boy,

与他们对一个小男孩的期望不同，

which is reasonable.

这是合理的。

But society also expects more of a little girl than a little boy.

但社会对小女孩的期望 也比对小男孩的期望高。

From a young age, girls are expected to have higher emotional intelligence

从小到大，女孩就被期望拥有更高的情商

and care more about their peers' emotions than boys.

并且比男孩更关心她们同伴的情绪。

This is reinforced in almost every aspect of their life,

这一点几乎在她们生活 的每个方面都得到了加强，

from TV shows and toys to the words and actions of family and teachers.

从电视节目和玩具到家人和老师的言行。

Women are better at masking because society expects more from us,

女性更善于掩饰，因为社会 对我们的期望更高，

and it doesn't make as many allowances for us.

对我们没有那么多的宽容。

Sometimes society will make exceptions for the social deficits of autistic men

有时社会会对自闭症男性 的社会缺陷做出例外处理

in exchange for the knowledge and perspective

以换取他们能带来的

they can bring to the table.

知识和观点。

But it won't do the same thing for autistic women.

但对自闭症女性不会做同样的事情。

I want you to walk away from this auditorium

我希望当你们离开这个礼堂的时候

knowing that autism is not a disease, and it doesn’t need to be cured.

可以知道自闭症不是 一种疾病，也不需要被治好。

It's just a different way some brains can work.

这只是大脑的工作方式不同而已。

If you want to help autistic people,

如果你想帮助自闭症患者，

you can support organizations like Autistics for Autistics,

你可以支持像自闭症患者互助会，

Autistic Self Advocacy Network

自闭症患者自我倡导网络

and Autistic Women and Nonbinary Network

和自闭症女性与非二元性别者网络

that support autistic self-love and acceptance,

这样支持自闭症患者自爱与接纳的组织，

as opposed to organizations that spread fear about autism.

而不是那些散布对自闭症恐惧的组织。

You should also identify yourself as an autistic advocate

你也应该对你生活中的人表明

to people in your life.

自己是自闭症倡导者。

Be understanding and allow friends and family to unmask with you.

要理解并允许朋友和 家人与你一起揭开面具。

This is also a call to action for the psychology community

这也是呼吁心理学界

to conduct more research on autism in women,

进行更多关于女性，

people of color and other minorities.

有色人种和其他少数民族 自闭症的研究行动。

Most of all, I want you to know

最重要的是，我想让你知道

that every person with autism is different.

每个自闭症患者都是不同的。

I got up here today to share my perspective

我今天上台来分享我的观点

because I'm not what a lot of people would think of as an autistic person.

是因为我不是很多人认为的自闭症患者。

But that doesn't mean that every woman with autism

但这并不意味着每个患有自闭症的女性

will have the same or even a similar experience to mine.

都会有与我相同甚至相似的经历。

My autism journey is just one out of thousands

我的自闭症旅程只是成千上万个中的一个

that can provide insight into the way autistic people think,

它可以让人深入了解 自闭症患者的思维方式，

interact with our society and see the world.

与我们的社会互动以及看待世界。

Thank you.

谢谢。

(Applause)

(掌声）