TEDWomen 2015
Alix Generous: How I learned to communicate my inner life with Asperger's
Alix Generous: Bagaimana saya sebagai penderita Asperger belajar menyampaikan dunia saya
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Alix Generous adalah seorang wanita muda dengan banyak ide -- dia memenangkan penelitian ilmiah, membantu mengembangkan teknologi baru, dan melontarkan candaan yang lucu (lihatlah nanti). Dia menderita Asperger, sejenis kelainan spektrum autisme yang dapat menghalangi keterampilan sosial dasar berkomunikasi, dan dia bekerja keras selama bertahun-tahun untuk mempelajari bagaimana cara menyampaikan pemikirannya kepada orang lain. Dalam ceramah pribadinya yang jenaka ini, dia berbagi kisah -- dan mimpinya akan suatu peralatan untuk membantu banyak orang mengkomunikasikan ide-ide besar mereka.
Alix Generous - Advocate
Alix Generous is a college student and biology researcher with Asperger syndrome. She stresses the importance of building accepting environments for all kinds of minds. Full bio
Alix Generous is a college student and biology researcher with Asperger syndrome. She stresses the importance of building accepting environments for all kinds of minds. Full bio
Double-click the English transcript below to play the video.
00:12
Today, I want to talk to you about dreams.
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Hari ini, saya ingin
berbicara tentang mimpi.
berbicara tentang mimpi.
00:15
I have been a lucid dreamer my whole life,
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Sejak kecil,
saya mampu mengendalikan mimpi,
saya mampu mengendalikan mimpi,
hal itu lebih keren daripada film.
00:18
and it's cooler than in the movies.
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00:20
(Laughter)
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(Tertawa)
Terbang bebas, menghembuskan api,
00:22
Beyond flying, breathing fire,
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dan membuat pria seksi tiba-tiba muncul...
00:25
and making hot men
spontaneously appear ...
spontaneously appear ...
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(Tertawa)
00:28
(Laughter)
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Saya jadi bisa membaca dan mencipta musik.
00:30
I can do things like read and write music.
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00:33
Fun fact is that I wrote
my personal statement to college
my personal statement to college
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Kenyataannya, saya menulis
esai masuk universitas
esai masuk universitas
dalam mimpi.
00:36
in a dream.
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Dan saya diterima. Begitulah.
00:38
And I did accepted. So, yeah.
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00:41
I am a very visual thinker.
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Saya adalah pemikir visual.
00:44
I think in pictures, not words.
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Saya berpikir dalam gambar,
bukan kata-kata.
bukan kata-kata.
00:47
To me, words are more like
instincts and language.
instincts and language.
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Bagi saya, kata-kata
seperti naluri dan bahasa.
seperti naluri dan bahasa.
00:51
There are many people like me;
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Ada banyak orang seperti saya;
Nikola Tesla, misalnya,
00:53
Nikola Tesla, for example,
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yang dapat membayangkan, merancang,
menguji, dan memecahkan semua masalah --
menguji, dan memecahkan semua masalah --
00:56
who could visualize, design,
test, and troubleshoot everything --
test, and troubleshoot everything --
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semua penemuannya --
dilakukan dalam pikirannya dengan akurat.
dilakukan dalam pikirannya dengan akurat.
01:01
all of his inventions --
in his mind, accurately.
in his mind, accurately.
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01:06
Language is kind of exclusive
to our species, anyway.
to our species, anyway.
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Namun, bahasa agak eksklusif
bagi spesies kami.
bagi spesies kami.
Saya agak primitif,
01:09
I am a bit more primitive,
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seperti versi beta Google Translate.
01:12
like a beta version of Google Translate.
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(Tertawa)
01:14
(Laughter)
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01:18
My brain has the ability
to hyper-focus on things that interest me.
to hyper-focus on things that interest me.
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Otak saya dapat fokus
pada hal yang menarik bagi saya.
pada hal yang menarik bagi saya.
01:23
For example, once
I had an affair with calculus
I had an affair with calculus
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Contohnya, dulu saya
ada hubungan rahasia dengan kalkulus,
ada hubungan rahasia dengan kalkulus,
itu bertahan lebih lama
daripada beberapa pernikahan selebriti.
daripada beberapa pernikahan selebriti.
01:25
that lasted longer
than some celebrity marriages.
than some celebrity marriages.
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01:28
(Laughter)
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(Tertawa)
01:32
There are some other
unusual things about me.
unusual things about me.
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Ada beberapa hal aneh tentang saya.
01:36
You may have noticed
that I don't have much inflection
that I don't have much inflection
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Anda mungkin menyadari,
saya tak memakai banyak perubahan kata,
saya tak memakai banyak perubahan kata,
saat saya berbicara.
01:39
in my voice.
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Itu sebabnya orang sulit membedakan
antara saya dan GPS.
antara saya dan GPS.
01:40
That's why people
often confuse me with a GPS.
often confuse me with a GPS.
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(Tertawa)
01:43
(Laughter)
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01:48
This can make basic communication
a challenge, unless you need directions.
a challenge, unless you need directions.
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Ini menyulitkan komunikasi sederhana,
tapi tidak jika Anda butuh petunjuk arah.
tapi tidak jika Anda butuh petunjuk arah.
(Tertawa)
01:52
(Laughter)
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Terima kasih.
01:56
Thank you.
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(Tepuk tangan)
01:57
(Applause)
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02:02
A few years ago, when I started
doing presentations,
doing presentations,
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Beberapa tahun lalu,
ketika saya mulai presentasi,
ketika saya mulai presentasi,
saya membuat pas foto
untuk yang pertama kalinya.
untuk yang pertama kalinya.
02:05
I went to get head shots done
for the first time.
for the first time.
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02:09
The photographer told me to look flirty.
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Fotografernya meminta saya
untuk berpose genit.
untuk berpose genit.
(Tertawa)
02:12
(Laughter)
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Dan saya tak menangkap maksudnya.
02:14
And I had no idea
what she was talking about.
what she was talking about.
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(Tertawa)
02:17
(Laughter)
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Katanya, "Mainkan matamu,
02:18
She said, "Do that thing,
you know, with your eyes,
you know, with your eyes,
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seperti saat kau menggoda pria."
02:21
when you're flirting with guys."
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"Mainkan apa?" tanya saya.
02:23
"What thing?" I asked.
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02:25
"You know, squint."
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"Kedipkan mata."
02:27
And so I tried, really.
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Lalu saya coba saja.
Jadinya seperti ini.
02:29
It looked something like this.
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02:31
(Laughter)
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(Tertawa)
Saya terlihat seperti
sedang mencari tokoh kartun Waldo.
sedang mencari tokoh kartun Waldo.
02:33
I looked like I was searching for Waldo.
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(Tertawa)
02:36
(Laughter)
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02:40
There's a reason for this,
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Ini ada alasannya,
02:42
as there is a reason that Waldo is hiding.
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seperti halnya mengapa Waldo bersembunyi.
(Tertawa)
02:44
(Laughter)
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02:52
I have Asperger's,
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Saya menderita Asperger,
semacam autisme dengan banyak fungsi
02:54
a high-functioning form of autism
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yang menghalangi
kecakapan sosial dasar seseorang.
kecakapan sosial dasar seseorang.
02:56
that impairs the basic social skills
one is expected to display.
one is expected to display.
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03:02
It's made life difficult in many ways,
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Dalam berbagai hal, hidup menjadi sulit,
dan saat tumbuh besar,
saya sulit diterima secara sosial.
saya sulit diterima secara sosial.
03:05
and growing up,
I struggled to fit in socially.
I struggled to fit in socially.
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03:09
My friends would tell jokes,
but I didn't understand them.
but I didn't understand them.
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Teman-teman menjadikan saya
bahan gurauan yang membuat saya bingung.
bahan gurauan yang membuat saya bingung.
03:14
My personal heroes were George Carlin
and Stephen Colbert --
and Stephen Colbert --
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Pahlawan pribadi saya
adalah George Carlin dan Stephen Colbert,
adalah George Carlin dan Stephen Colbert,
dan mereka mengajari saya humor.
03:19
and they taught me humor.
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03:22
My personality switched
from being shy and awkward
from being shy and awkward
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Kepribadian saya berubah
dari malu-malu dan canggung,
dari malu-malu dan canggung,
menjadi berani dan menantang.
03:26
to being defiant and cursing out a storm.
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03:30
Needless to say,
I did not have many friends.
I did not have many friends.
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Akhirnya, saya tak punya banyak teman.
03:33
I was also hypersensitive to texture.
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Saya juga terlalu sensitif
terhadap tekstur.
terhadap tekstur.
03:36
The feel of water on my skin
was like pins and needles,
was like pins and needles,
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Air yang mengenai kulit saya
terasa seperti peniti dan jarum,
terasa seperti peniti dan jarum,
jadi bertahun-tahun, saya tak mau mandi.
03:40
and so for years, I refused to shower.
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03:43
I can assure you that my hygiene routine
is up to standards now, though.
is up to standards now, though.
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Tapi saat ini
standar kebersihan saya sudah bagus.
standar kebersihan saya sudah bagus.
(Tertawa)
03:47
(Laughter)
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03:50
I had to do a lot to get here,
and my parents --
and my parents --
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Banyak yang harus saya lalui sampai bisa
seperti sekarang dan orang tua saya --
seperti sekarang dan orang tua saya --
semua jadi kacau ketika saya diserang
secara seksual oleh teman sebaya,
secara seksual oleh teman sebaya,
03:54
things kind of got out of control
when I was sexually assaulted by a peer,
when I was sexually assaulted by a peer,
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dan itu membuat
situasi sulit bertambah parah.
situasi sulit bertambah parah.
03:59
and on top of everything,
it made a difficult situation worse.
it made a difficult situation worse.
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04:05
And I had to travel 2,000 miles
across the country to get treatment,
across the country to get treatment,
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Dan saya harus ke negara lain yang jauh
untuk mendapat perawatan,
untuk mendapat perawatan,
tapi saat para dokter
sedang memikirkan pengobatan baru,
sedang memikirkan pengobatan baru,
04:10
but within days of them prescribing
a new medication,
a new medication,
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hidup saya menjadi mengerikan.
04:14
my life turned into an episode
of the Walking Dead.
of the Walking Dead.
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04:18
I became paranoid,
and began to hallucinate
and began to hallucinate
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Saya ketakutan dan mulai berhalusinasi,
bahwa mayat busuk datang mendekati saya.
04:21
that rotting corpses
were coming towards me.
were coming towards me.
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04:24
My family finally rescued me,
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Keluarga saya akhirnya menyelamatkan saya,
tapi selama tiga minggu itu,
berat saya turun 8,6 kg,
berat saya turun 8,6 kg,
04:27
but by that time, I had lost 19 pounds
in those three weeks,
in those three weeks,
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saya juga menderita anemia akut,
04:32
as well as developing severe anemia,
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dan di ambang bunuh diri.
04:34
and was on the verge of suicide.
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04:38
I transferred to a new treatment center
that understood my aversions,
that understood my aversions,
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Saya dipindahkan ke klinik perawatan baru
yang mengerti masalah saya,
yang mengerti masalah saya,
trauma saya, dan kecemasan sosial saya,
04:42
my trauma, and my social anxiety,
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mereka bisa menganganinya,
dan saya mendapat bantuan yang dibutuhkan.
dan saya mendapat bantuan yang dibutuhkan.
04:46
and they knew how to treat it,
and I got the help I finally needed.
and I got the help I finally needed.
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04:50
And after 18 months of hard work,
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Dan setelah 18 bulan susah payah,
saya mulai melakukan
hal-hal yang luar biasa.
hal-hal yang luar biasa.
04:52
I went on to do incredible things.
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04:56
One of the things with Asperger's
is that oftentimes,
is that oftentimes,
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Salah satu masalah penderita Asperger,
yaitu sering punya dunia sendiri
yang amat kompleks,
yang amat kompleks,
05:00
these people have
a very complex inner life,
a very complex inner life,
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dan saya sendiri tahu
kepribadian saya amat beragam,
kepribadian saya amat beragam,
05:02
and I know for myself,
I have a very colorful personality,
I have a very colorful personality,
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kaya akan ide,
dan banyak yang saya pikirkan.
dan banyak yang saya pikirkan.
05:05
rich ideas, and just a lot
going on in my mind.
going on in my mind.
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Tapi ada jurang antara keadaan itu
05:08
But there's a gap
between where that stands,
between where that stands,
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dengan cara saya
menyampaikannya ke orang lain.
menyampaikannya ke orang lain.
05:12
and how I communicate it
with the rest of the world.
with the rest of the world.
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05:15
And this can make
basic communication a challenge.
basic communication a challenge.
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Dan ini membuat komunikasi sederhana
menjadi suatu tantangan besar.
menjadi suatu tantangan besar.
Sedikit yang mau mempekerjakan saya
karena kecakapan sosial yang tak memadai,
karena kecakapan sosial yang tak memadai,
05:20
Not many places would hire me,
due to my lack of social skills,
due to my lack of social skills,
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05:23
which is why I applied to Waffle House.
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karena itu saya melamar ke Waffle House.
(Tertawa)
05:25
(Laughter)
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05:32
Waffle House is an exceptional
24-hour diner --
24-hour diner --
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Waffle House adalah kedai 24 jam
yang agak berbeda --
yang agak berbeda --
(Tertawa)
05:35
(Laughter)
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(Tepuk tangan)
05:37
(Applause)
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Terima kasih --
05:41
thank you --
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Di sana bisa memesan kentang panggang,
05:42
where you can order your hash browns
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sesering orang membuang mayat...
05:44
the many ways that someone
would dispose of a human corpse ...
would dispose of a human corpse ...
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(Tertawa)
05:47
(Laughter)
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Diiris, dipotong, dibumbui, dicincang,
ditaburi, ditutup, dan dibungkus.
ditaburi, ditutup, dan dibungkus.
05:49
Sliced, diced, peppered, chunked,
topped, capped, and covered.
topped, capped, and covered.
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(Tertawa)
05:54
(Laughter)
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Seperti yang ada dalam norma sosial,
05:56
As social norms would have it,
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05:57
you should only go to Waffle House
at an ungodly hour in the night.
at an ungodly hour in the night.
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Waffle House hanya tersedia
pada jam tak lazim di malam hari.
pada jam tak lazim di malam hari.
(Tertawa)
06:01
(Laughter)
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Suatu saat jam 2 pagi,
saya mengobrol dan bertanya pada pelayan,
saya mengobrol dan bertanya pada pelayan,
06:02
So one time, at 2 am, I was chatting
with a waitress, and I asked her,
with a waitress, and I asked her,
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"Hal paling konyol apa yang pernah
Anda alami di pekerjaan ini?"
Anda alami di pekerjaan ini?"
06:07
"What's the most ridiculous thing
that's happened to you on the job?"
that's happened to you on the job?"
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06:10
And she told me that one time,
a man walked in completely naked.
a man walked in completely naked.
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Dan dia bercerita pernah ada
seorang pria datang telanjang bulat.
seorang pria datang telanjang bulat.
06:14
(Laughter)
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(Tertawa)
Saya bilang, "Bagus!
Daftarkan saya di jadwal shift yang sepi!"
Daftarkan saya di jadwal shift yang sepi!"
06:15
I said, "Great! Sign me up
for the graveyard shift!"
for the graveyard shift!"
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06:18
(Laughter)
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(Tertawa)
Akhirnya, Waffle House tak menerima saya.
06:20
Needless to say,
Waffle House did not hire me.
Waffle House did not hire me.
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06:25
So in terms of having Asperger's,
it can be viewed as a disadvantage,
it can be viewed as a disadvantage,
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Jadi menderita Asperger
bisa dianggap sebagai kerugian,
bisa dianggap sebagai kerugian,
dan terkadang ini benar-benar menyiksa,
06:30
and sometimes it is
a real pain in the butt,
a real pain in the butt,
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tapi terkadang juga sebaliknya.
06:32
but it's also the opposite.
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Ini adalah anugerah,
yang membuat saya berpikir inovatif.
yang membuat saya berpikir inovatif.
06:34
It's a gift, and it allows me
to think innovatively.
to think innovatively.
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06:38
At 19, I won a research competition
for my research on coral reefs,
for my research on coral reefs,
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Di usia 19 tahun, saya menang
kompetisi penelitian terumbu karang,
kompetisi penelitian terumbu karang,
dan saya memberikan ceramah
06:45
and I ended up speaking
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di Konvensi Keberagaman Biologis PBB,
06:47
at the UN Convention
of Biological Diversity,
of Biological Diversity,
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mempresentasikan penelitian saya.
06:49
presenting this research.
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06:50
(Applause)
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(Tepuk tangan)
Terima kasih.
06:52
Thank you.
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(Tepuk tangan)
06:53
(Applause)
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Di usia 22, saya hampir lulus kuliah,
06:58
And at 22, I'm getting ready
to graduate college,
to graduate college,
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dan saya menjadi salah satu pendiri
perusahaan biotek bernama AutismSees.
perusahaan biotek bernama AutismSees.
07:02
and I am a co-founder of a biotech
company called AutismSees.
company called AutismSees.
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07:08
(Applause)
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(Tepuk tangan)
Terima kasih.
07:09
Thank you.
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(Tepuk tangan)
07:10
(Applause)
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Tapi bayangkan perjuangan saya
untuk bisa jadi seperti saat ini:
untuk bisa jadi seperti saat ini:
07:13
But consider what I had to do to get here:
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07:16
25 therapists, 11 misdiagnoses,
and years of pain and trauma.
and years of pain and trauma.
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25 terapis, 11 kesalahan diagnosa,
dan tahunan rasa sakit dan trauma.
dan tahunan rasa sakit dan trauma.
07:22
I spent a lot of time thinking
if there's a better way,
if there's a better way,
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Saya berpikir terus,
apakah ada cara yang lebih baik,
apakah ada cara yang lebih baik,
dan menurut saya ada,
yaitu teknologi bantu-autisme.
yaitu teknologi bantu-autisme.
07:25
and I think there is:
autism-assistive technology.
autism-assistive technology.
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Teknologi ini bisa berperan secara terpadu
07:30
This technology
could play an integral role
could play an integral role
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dalam membantu
penderita kelainan spektrum autisme,
penderita kelainan spektrum autisme,
07:32
in helping people
with autistic spectrum disorder,
with autistic spectrum disorder,
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atau ASD (Autism Spectrum Disorder).
07:35
or ASD.
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07:38
The app Podium, released
by my company, AutismSees,
by my company, AutismSees,
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Aplikasi Podium yang dirilis
oleh perusahaan saya, AutismSees,
oleh perusahaan saya, AutismSees,
secara mandiri mampu menilai dan membantu
mengembangkan kecakapan berkomunikasi.
mengembangkan kecakapan berkomunikasi.
07:43
has the ability to independently assess
and help develop communication skills.
and help develop communication skills.
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07:49
In addition to this, it tracks
eye contact through camera
eye contact through camera
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Aplikasi ini juga menelusuri
kontak mata melalui kamera,
kontak mata melalui kamera,
dan mensimulasikan pengalaman berbicara
di depan umum dan wawancara kerja.
di depan umum dan wawancara kerja.
07:53
and simulates a public-speaking
and job-interview experience.
and job-interview experience.
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Dan mungkin suatu hari,
Waffle House akan merekrut saya,
Waffle House akan merekrut saya,
08:00
And so maybe one day,
Waffle House will hire me,
Waffle House will hire me,
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08:03
after practicing on it some more.
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setelah beberapa kali latihan lagi.
(Tertawa)
08:05
(Laughter)
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08:09
And one of the great things
is that I've used Podium
is that I've used Podium
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Dan hebatnya,
saya telah menggunakan aplikasi Podium
saya telah menggunakan aplikasi Podium
untuk mempersiapkan hari ini,
dan itu sangat membantu.
dan itu sangat membantu.
08:14
to help me prepare for today,
and it's been a great help.
and it's been a great help.
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Tapi bukan hanya itu.
08:19
But it's more than that.
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Lebih banyak lagi yang bisa dicapai.
08:21
There's more that can be done.
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08:24
For people with ASD --
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Bagi penderita ASD --
diperkirakan banyak ilmuwan inovatif,
08:27
it has been speculated
that many innovative scientists,
that many innovative scientists,
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peneliti, seniman,
dan insinyur yang memilikinya;
dan insinyur yang memilikinya;
08:31
researchers, artists,
and engineers have it;
and engineers have it;
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seperti misalnya, Emily Dickinson,
Jane Austen, Isaac Newton, dan Bill Gates
Jane Austen, Isaac Newton, dan Bill Gates
08:36
like, for example, Emily Dickinson,
Jane Austen, Isaac Newton, and Bill Gates
Jane Austen, Isaac Newton, and Bill Gates
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adalah beberapa contoh.
08:42
are some examples.
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Tapi masalahnya,
08:44
But the problem that's encountered
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ide cemerlang ini
seringnya tak dapat dibagikan,
seringnya tak dapat dibagikan,
08:46
is that these brilliant ideas
often can't be shared
often can't be shared
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jika ada halangan komunikasi.
08:49
if there are communication roadblocks.
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08:53
And so, many people with autism
are being overlooked every day,
are being overlooked every day,
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Dengan begitu,
penderita autisme terus diabaikan,
penderita autisme terus diabaikan,
dan mereka dimanfaatkan.
08:57
and they're being taken advantage of.
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09:01
So my dream for people with autism
is to change that,
is to change that,
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Jadi mimpi saya bagi penderita autisme
adalah untuk mengubahnya,
adalah untuk mengubahnya,
untuk menyingkirkan hambatan
yang menghalangi kesuksesan mereka.
yang menghalangi kesuksesan mereka.
09:08
to remove the roadblocks
that prevent them from succeeding.
that prevent them from succeeding.
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09:11
One of the reasons I love lucid dreaming
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Satu alasan kenapa saya
suka mengendalikan mimpi,
suka mengendalikan mimpi,
karena hal itu membuat saya bebas,
09:14
is because it allows me to be free,
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tanpa penghakiman
konsekuensi sosial dan fisik.
konsekuensi sosial dan fisik.
09:17
without judgment of social
and physical consequences.
and physical consequences.
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Saat melompati setiap adegan
yang saya ciptakan dalam pikiran,
yang saya ciptakan dalam pikiran,
09:21
When I'm flying over scenes
that I create in my mind,
that I create in my mind,
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09:24
I am at peace.
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saya merasa damai.
09:27
I am free from judgment,
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Saya bebas dari penghakiman,
jadi saya bebas menentukan
keinginan saya sendiri.
keinginan saya sendiri.
09:29
and so I can do whatever I want, you know?
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Saya bercinta dengan Brad Pitt
dan Angelina santai saja.
dan Angelina santai saja.
09:31
I'm making out with Brad Pitt,
and Angelina is totally cool with it.
and Angelina is totally cool with it.
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(Tertawa)
09:36
(Laughter)
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09:39
But the goal of autism-assistive
technology is bigger than that,
technology is bigger than that,
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Tapi tujuan teknologi bantu-autisme
lebih besar dari itu,
lebih besar dari itu,
dan lebih penting.
09:43
and more important.
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09:45
My goal is to shift people's perspective
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Tujuan saya
adalah mengubah cara pandang orang
adalah mengubah cara pandang orang
terhadap autisme
dan penderita Asperger banyak fungsi,
dan penderita Asperger banyak fungsi,
09:49
of autism and people
with higher-functioning Asperger's
with higher-functioning Asperger's
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karena banyak yang dapat mereka lakukan.
09:54
because there is a lot they can do.
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Contohnya,
lihatlah Profesor Temple Grandin.
lihatlah Profesor Temple Grandin.
09:58
I mean, look at
Temple Grandin, for example.
Temple Grandin, for example.
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Dengan begitu, terbuka peluang
bagi mereka untuk membagikan bakatnya,
bagi mereka untuk membagikan bakatnya,
10:02
And by doing so, we allow people
to share their talents with this world
to share their talents with this world
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dan membuat dunia ini maju.
10:07
and move this world forward.
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Sebagai tambahan, kami memberikan
dorongan untuk mengejar mimpi mereka
dorongan untuk mengejar mimpi mereka
10:09
In addition, we give them the courage
to pursue their dreams
to pursue their dreams
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di dunia nyata, di waktu nyata.
10:12
in the real world, in real time.
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Terima kasih.
10:15
Thank you.
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(Tepuk tangan)
10:16
(Applause)
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Terima kasih.
10:19
Thank you.
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10:21
(Applause)
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ABOUT THE SPEAKER
Alix Generous - AdvocateAlix Generous is a college student and biology researcher with Asperger syndrome. She stresses the importance of building accepting environments for all kinds of minds.
Why you should listen
Alix Generous has Asperger syndrome, but was misdiagnosed for years. A student and researcher who is passionate about molecular biology and neuroscience, she encourages people like her to share their intelligence and insights. She is a co-owner of the startup AutismSees, which develops technology tools to help all kinds of people give presentations.
At 19, Generous won first place in a nationwide competition for her work in quorum sensing and coral reefs. Her paper titled "Environmental Threats on the Symbiotic Relationship of Coral Reefs and Quorum Sensing," was published in Consilience. In November 2013, she was a youth delegate for the UN Convention of Climate Change (COP19), where she negotiated technology transfers and issues of medical importance. She has assisted neuroscience researchers at the Medical University of South Carolina, Tufts University School of Medicine, and the University of Vermont.
Alix Generous | Speaker | TED.com