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

譯者: Lilian Chiu 審譯者: SF Huang

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

我這個年輕女性遇到過 一些挺酷的機會。

One that I'm most proud of

其中我最驕傲的

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

就是還不到十七歲，達拉斯藝術中心 就展出了我的藝術品。

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

當我和其他年輕藝術家一起 在禮堂接受成就表揚時，

being honored for our achievements,

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

我其實無法去想對自己有多自豪。

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

我滿腦子想的

都是椅子的襯墊觸碰到 我手腳的後側。

touching the back of my arms and legs.

For me, the sensation of touching velvet is unbearable.

觸碰到絲絨的感覺讓我無法忍受。

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

各位可能在想：

「我也不喜歡某些材質。」

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

但各位要知道，故事不只這樣。

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

我是凱特‧凱爾， 今年二十歲，有自閉症。

When I was a freshman in high school,

我剛進入高中時，

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

我的家人注意到我很難跟同儕連結。

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

我也出現嚴重的焦慮， 且以意想不到的方式來呈現。

I had always had autistic traits and struggles,

我一直都有自閉症的特徵和障礙，

but I just thought I was weird.

但我只以為我很怪。

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

我父母帶我去做評估， 因而發現我有自閉症。

We were all shocked

我們都很震驚，因為，

because I'm not what people would typically think of

我沒有一般認知中自閉症的樣子。

as an autistic person.

Autism is diagnosed

診斷出自閉症指的是

when social expectations for neurotypical behavior

社會期待一般人 (神經典型者) 應有的行為表現

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

對自閉症者來說， 不在他們能力可達成的範圍。

Autism spectrum disorder, or ASD,

自閉症類群障礙（ASD）

is a lifelong developmental disability

是種終生的發展障礙，

that can cause deficits in communication,

可能會造成溝通、

social interaction, emotional awareness,

社交互動和情緒意識上的障礙、

and it can cause sensory issues among other symptoms.

也可能會造成感官問題及其他症狀。

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

自閉症是終生的，因為 它不是疾病所以無法治癒。

It's a neurodivergency,

它是種神經多樣性，也就是說，

which means that the autistic brain

自閉症的大腦和神經典型的 (一般人) 大腦運作方式不同。

works differently than the neurotypical brain.

No one is sure why some people have autism.

沒有人知道為什麼有人會有自閉症。

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

診斷的標準之一

是症狀必須要是從出生 或幼兒期就出現了。

from birth or early childhood,

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

意即，它的成因不是不良飲食、

不良教養、疫苗

vaccinations, and it's not contagious.

且它不會傳染。

Evidence has shown that autism can be passed down genetically,

證據顯示，

自閉症可以透過基因傳給 孩子，意即可能是家族遺傳。

which means it may run in families.

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

我發現，很多一般人， 甚至一些自閉症患者，

struggle with the concept of the autism spectrum.

很難接受「自閉症類群」的概念。

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

我認為，部分是因為名字取得不好，

but also partly because

還有一個原因是

the way that experts and researchers think about autism

隨著專家和研究者做更多研究，

is changing all the time as they do more research.

他們對自閉症的看法也不斷在改變。

In the past, autism had three categories:

在過去，自閉症分為三類：

輕度、中度、重度。

mild, moderate and severe.

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

後來則認為自閉症的程度 是連續的光譜，

from high-functioning to low-functioning,

從高功能到低功能，

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

高功能自閉症被稱為 亞斯伯格症候群。

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

各位可能會認為， 只要病人症狀都相同，

what you call their disorder doesn't matter.

怎麼稱呼他們的疾病都沒關係。

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

我不喜歡亞斯伯格症候群 這個詞的原因如下：

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

漢斯‧亞斯伯格是醫生及早期 研究自閉症兒童的研究者，

who he called "autistic psychopaths."

他稱這些兒童「自閉症精神病患」。

He believed in eugenics,

他相信優生學，

and he sent many of the kids that he worked with

他將許多他處理的孩子交給

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

第三帝國的兒童安樂死及絕育計畫。

雖然不是納粹的主要目標，

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

自閉症患者被認為會威脅到

to the Third Reich goal of a genetically pure society.

第三帝國所追求的： 基因純正的社會。

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

使用「亞斯伯格症候群」這個詞，

they're unknowingly reinforcing the idea

無意間就是在強化「自閉症 患者對社會沒價值」的想法。

that autistic people have no value to society.

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

這就是為什麼我偏好我的狀況 被稱為自閉症類群障礙

or autism instead of Asperger's syndrome.

或自閉症，而不是亞斯伯格症候群。

現在，自閉症類群 被認為是這個樣子的。

Nowadays the spectrum is thought of more like this.

This shows some of the struggles that autistic people can have

圖上可以看到自閉症患者 可能遇到的一些障礙，

and the varying degrees to which each person can struggle

以及每個人

with those particular issues.

為這些問題所苦的程度。

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

自閉症的症狀相當多， 每個人的狀況也都很不同。

Some symptoms you might think of when you think of autism

提到自閉症時大家會想到的 一些症狀包括不敢眼神接觸、

are struggling to make eye contact, poor communication,

溝通不良、

感官問題，

sensory issues and obsessing over special interests.

以及沉迷在特殊的興趣中。

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

但也有許多各位可能 從來沒有想過到的症狀，

比如情緒高漲、

like heightened emotions,

making too much eye contact or high affective empathy.

眼神接觸過多或高情感同理心。

A lot of these less commonly thought of symptoms

這些比較少被想到的症狀，多半 出現在女性自閉症者身上。

are more common in women and girls with autism.

Here you can see a spectrum

這張圖

that I filled out to reflect my experiences.

是我把我自身的經驗 填寫在這個類群光譜上。

As you can see,

各位可以看見，

I have lots of sensory issues with textures and sounds,

我有許多和材質及聲音 相關的感官問題，

I focus a lot on my special interests,

我很專注在我的特殊興趣上，

and I have high affective empathy

且我的情感同理心很強， 讓我很容易和他人溝通。

which allows me to easily communicate with others.

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

在初次被診斷給震驚之後， 一切都開始變得合理了。

I finally realized why I had struggled

我終於了解為什麼我很難

察覺他人的負面情緒，比如 當他們悲傷或受挫的時候。

to pick up on other people's negative emotions,

like when they're sad or frustrated.

在我人生的前十五年， 我的關係都一直受到其影響。

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

I'm very grateful for my diagnosis

我很感謝我被診斷出來，因為 那讓我能了解和接受我自己。

because it allowed me to understand and accept myself,

and I was very lucky to get it.

我很幸運能被診斷出來。

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

每四位男孩被診斷出自閉症，

才會有一位女孩被診斷出來。

Studies that have followed children since birth show

從出生就在追蹤兒童的研究發現，

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

自閉症者中男女的 自然比率接近三比一。

The discrepancy between this diagnostic rate

診斷出的自閉症者和實際的自閉症者

and the actual rate of autism between males and females

在男女比例上不一致，

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

成因可能是自閉症 被定義和研究的方式

and the tests used to diagnose it.

以及用來診斷的測驗方式。

The tests used to diagnose autism

用來診斷自閉症用的測驗仍立基在

are still based on studies done on white autistic boys,

對白種男孩自閉症者的研究上，

which likely leads to lower and misdiagnosis in women.

可能會導致女性自閉症者 不易被診斷出來或被誤診。

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

我要補充，不只女性 會遇到這個問題，

弱勢族群也會。

White children are 19 percent more likely than Black children

就被診斷出自閉症的 機率來說，白人兒童

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

比黑人兒童多 19%， 比西班牙裔兒童多 65%。

Males who outwardly display mild symptoms of autism

同樣都是展現出輕微 自閉症症狀的患者，

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

男性平均會比女性 早兩年被診斷出來。

This might be because female special interests

這有可能是因為，一般來說，

are generally more socially accepted than male special interests.

女性的特殊興趣比男性的 更容易被社會接受。

When nonautistic people think about autism special interest,

談到自閉症者的特殊興趣， 非自閉症者通常會想到的

the thing that usually comes to mind is trains.

是火車。

I've never had any interest in trains.

我從來沒有對火車感興趣過。

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

在小時候，

我的特殊興趣是昆蟲。

The people in my life saw this

我身邊的人認為那只是 對科學投入的健康興趣，

as just a healthy interest in the sciences,

從來沒有人把它視為自閉症的特徵。

and it was never really flagged as an autistic trait.

While my special interests

雖然我的特殊興趣是一項 通常會被忽視的自閉症特徵，

were an autistic trait that was largely ignored,

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

我的其他自閉症特徵

都不為人知，因為 我很擅長偽裝它們。

Masking is a behavior by which autistic people try to camouflage

偽裝這種行為指的是：

自閉症者試圖掩飾， 讓自己看起來沒有自閉症。

and seem like they're not autistic.

Hearing this for the first time,

初次聽到這種事時，

neurotypical people might think that autistic people are insecure

一般人可能會認為 自閉症者沒有安全感，

or manipulative for trying to hide our symptoms.

或為了要隱藏我們的症狀 而很會去操弄人。

This isn't true.

不是這樣的。

The real reason an autistic person would mask

自閉症者會偽裝的真正原因

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

是出於很自然的人類慾望，

想融入、與人連結，

and achieve social and professional success.

並在社交上及職業上都能有所成。

Masking behaviors can include forcing eye contact,

偽裝的行為包括

強迫眼神交會、

mimicking others’ behaviors, expressions and gestures

模仿他人的行為、表達和手勢，

and even memorizing scripts for small talk and common conversations.

甚至為了閒聊和日常對話去背誦劇本。

Some people are more skilled at masking than others.

有些人比別人更擅長偽裝。

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

大家常告訴我我很擅長偽裝， 不論他們自己是否有意識到。

whether they know it or not.

When someone says to me

當有人告訴我，若我不說， 他們就不會知道我有自閉症，

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

或我看來不像有自閉症，

or even that I don't seem autistic,

他們在告訴我的 其實就是我很會偽裝。

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

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

很多人認為偽裝是好事。

偽裝能讓我過著「正常」的生活。

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

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

的確有些事在別人看不出你有 自閉症的情況下會比較容易，

when people can't tell you're autistic,

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

但有自閉症類群障礙的人 不可能不被它影響。

Autism is a part of us.

自閉症是我們的一部分。

It colors the way we think,

它讓我們一生中思考、和他人互動，

interact with others and see the world throughout our life.

及看世界的方式變得更多采多姿。

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

這並不是可以用偽裝來關掉的東西。

It simply gets pushed down to a level below that

它只是被硬是壓低到 別人看不見的地方而已。

at which other people can see it.

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

把真正的自我這樣壓低 是很費心力的事。

試想一下：

Think about this.

When you're having a conversation with somebody,

當你正在和某人交談時，

you're doing a lot of things at once.

你會同時做許多事。

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

你有正確的姿勢， 和對方保持對的距離，

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

你用適當的表情， 你會控制你的語調，

You might be gesturing.

你可能會用手勢，

You're making the right amount of eye contact.

你做適量的眼神接觸，

You're not not looking them in the eyes,

你不是不看對方的眼睛， 但不會看到讓他們感到發毛。

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

（笑聲）

(Laughter)

And you're predicting

你還要預測對方接下來 會說什麼、做什麼。

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

For neurotypical people, all of these things come naturally.

對一般人 (神經典型者) 來說， 上述這些都很自然。

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

各位甚至不用想就能做到。

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

但我卻得同時思考所有上述這些。

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

這些年來，

我學會了如何玩弄這些，

but it's a Herculean task,

但真的超困難，

and for some its complexity makes it impossible.

對某些人而言， 是複雜到不可能辦到。

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

偽裝的困難度可能會導致 次發性的心理健康問題。

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

很努力卻仍然不被接受 可能會造成憂鬱，

while anxiety can come from the stress

焦慮的成因則可能是壓力， 因為動不動就得要偽裝，

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

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

且大半人生的每天都得如此，

或者是被歧視和排斥的風險。

or risk being discriminated against and ostracized.

These secondary mental health challenges

尤其是女性更可能會有 這些次發性的心理健康問題。

are of particular issue for women and girls.

34 percent of women with autism have depression,

34% 的女性自閉症者有憂鬱症，

and 36 percent have anxiety.

36% 有焦慮症。

While these secondary mental health challenges are a big issue,

雖然這些次發性的 心理健康問題很大條，

the biggest problem masking causes for autistic people

偽裝帶給自閉症者最大的麻煩

is late and misdiagnoses.

是延誤和錯誤診斷。

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

很會偽裝的人可能 永遠不會被診斷出來。

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

男性和兒童被認為 是最不擅長偽裝的族群，

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

而他們也是最常被診斷出 自閉症類群障礙的族群。

Case studies show that women are more skilled at masking,

案例研究發現，女性比較擅長偽裝，

and this is likely a huge factor

這可能是造成她們延誤 和錯誤診斷的重要因素之一。

that contributes to their late and misdiagnoses.

The earlier a person is diagnosed with autism,

越早被診斷出自閉症，

the earlier they can receive specialized care and treatment

就能越早接受專門的照護和治療， 對生活的每個面向幾乎都有幫助。

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

Care for autistic people gets better all the time

隨著研究越做越多，自閉症 患者的照護也在不斷改善，

as more research is done,

but unfortunately, it's rare to find a therapist

但，不幸的是，

很難少會有治療師

or other people who assist autistic people

或其他協助自閉症患者的人，

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

能夠知道女性患者還有額外的難處。

When you struggle socially as a female,

若你是在社交有困難的女性，

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

學習男性在社交上 成功的方式是不夠的。

Womanhood is a unique and challenging experience all its own.

光是身為成年女性這件事本身 就是獨特又有挑戰的經歷了。

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

女性友誼的規則、如何談論戀情、

月經，甚至如何自保 免受性侵犯的侵害，

and even how to stay safe from sexual predators

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

都是女性自閉症患者要面對 卻得不到支持的障礙。

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

在我們的社會中，很容易

會認為性別是微不足道的、

obsolete or insignificant,

過時的或不重要的，

the truth is gender does matter.

事實卻是，不同性別還是有差。

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

在自閉症方面，則是差很大。

The difference comes in

差別在於

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

男性和女性在生活經歷上 有很大的脫節。

All autistic people are born autistic,

自閉症者出生就有自閉症，

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

但從出生起，

女孩會被推到在社交面上 比較嚴格的環境中，

that increases the pressure to mask

那會增加偽裝的壓力，

and the challenges an autistic person faces daily.

及自閉症者日常中所面臨到的困難。

For any autistic person, but especially women and girls,

針對任何自閉症者，特別是女性，

the part of their autism you can see

大家能看到的自閉症部分， 並非當事人實際上所經歷的。

is not what that person is actually experiencing.

It's impossible for someone with a limited outside perspective

觀點受限的外部人其實無法

to label someone else's autism,

給自閉症貼上標籤， 不論那標籤是「輕度」、

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

「中度」、「亞斯伯格症候群」、

or any other label.

「高功能」或任何其他標籤。

You can see me up here right now talking to you

各位看到我站在這裡對大家 講話，會試著給我貼標籤，

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

在各位腦中將我和各位曾經 見過的自閉症患者來做區分，

you may have met,

比如與在購物中心發生 感官崩潰的某個小男孩不一樣。

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

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

各位可以在腦中給我 貼標籤，來區分我們，

but the feelings that we're having on the inside

但我們內在的感受可能 比各位所想的還要相似。

are probably more similar than you would think.

我只是在經過數年的壓力 和練習之後學會偽裝它們。

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

This is partially because what society expects of a grown woman

有部分原因是因為 社會對成年女性的期望

is different than what they expect from a little boy,

和對小男孩的期望不同，

which is reasonable.

這是合理的。

但社會對小女孩的期望 會比小男孩更多。

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

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

從很小的時候，女孩就被 期望能有較高的情商，

and care more about their peers' emotions than boys.

且比男孩更會關心同儕的情緒。

This is reinforced in almost every aspect of their life,

這些期望被強加在她們 人生的幾乎每個面向上，

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

從電視節目和玩具，到家人 和老師的言語和行為。

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

女性比較擅長偽裝，因為 社會對我們的期望較多，

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

給我們的容忍度較低。

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

有時，社會願意為男性自閉症者的 社交障礙來破例，

in exchange for the knowledge and perspective

用以交換他們能帶來的知識和觀點。

they can bring to the table.

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

但社會不會為了女性自閉症者這麼做。

I want you to walk away from this auditorium

我希望各位等下離席之後，

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

要能記住，自閉症不是 疾病且不需要被治癒。

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

只是有些人的大腦 用不同的方式運作。

If you want to help autistic people,

如果你想協助自閉症者，

you can support organizations like Autistics for Autistics,

可以支持一些組織，如 Autistics for Autistics、

Autistic Self Advocacy Network

自閉症自我倡導網，

and Autistic Women and Nonbinary Network

和自閉症女性及非二元性別者網，

that support autistic self-love and acceptance,

它們都支持自閉症的自愛和接納，

as opposed to organizations that spread fear about autism.

不像一些組織會散播對自閉症的恐懼。

You should also identify yourself as an autistic advocate

你也應該向你生活中的人 表明你是自閉症倡導者，

to people in your life.

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

寬容一點，讓朋友及家人 在你面前卸下偽裝。

This is also a call to action for the psychology community

這也是在號召心理學圈採取行動，

to conduct more research on autism in women,

對女性的自閉症做更多研究，

people of color and other minorities.

還有有色人種及其他弱勢族群。

Most of all, I want you to know

最重要的是，我希望各位知道 每位自閉症者都不一樣。

that every person with autism is different.

I got up here today to share my perspective

今天我能站在這裡分享 我的觀點，是因為我不像多數人

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

認為的自閉症患者。

But that doesn't mean that every woman with autism

但那並不表示每位女性自閉症者

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

都會有和我一樣或相似的經歷。

My autism journey is just one out of thousands

除了我以外，還有數千人的 自閉症旅程能夠提供洞見，

that can provide insight into the way autistic people think,

說明自閉症者如何思考、

interact with our society and see the world.

如何和社會互動和如何看待世界。

Thank you.

謝謝。

(Applause)

（掌聲）