TED2015
Steve Silberman: The forgotten history of autism
Steve Silberman: Die vergete geskiedenis van outisme
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Dekades gelede was daar net 'n paar pediaters wat al van outisme gehoor het. In 1975 is daar beraam dat 1 in 5000 kinders dit het. Vandag is 1 uit elke 68 op die outismespektrum. Wat het hierdie groot styging veroorsaak? Steve Silberman verwys na "die perfekte kombinasie van faktore vir outisme-bewustheid" -- twee dokters wat 'n meer ontvanklike beskouing gebied het, 'n onverwagte oomblik in popkultuur en 'n nuwe kliniese toets. Om egter regtig te verstaan, moet ons verder teruggaan na die Oostenrykse dokter Hans Asperger, wat in 1944 'n baanbrekerartikel gepubliseer het. Omdat dit verlore geraak het in tyd, is outisme sedertdien in 'n waas van wanbegrip gehul. (Hierdie toespraak was deel van 'n TED2015-sessie wat deur Pop-Up Magazine saamgestel is: popupmagazine.com of @popupmag op Twitter.)
Steve Silberman - Writer and editor
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Double-click the English transcript below to play the video.
00:12
Just after Christmas last year,
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Net na Kersfees verlede jaar
00:15
132 kids in California got the measles
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het 132 kinders
in Kalifornië masels gekry
in Kalifornië masels gekry
00:19
by either visiting Disneyland
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deur Disneyland te besoek
00:21
or being exposed to someone
who'd been there.
who'd been there.
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of blootgestel te word
aan iemand wat daar was.
aan iemand wat daar was.
00:24
The virus then hopped the Canadian border,
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Die virus het toe
die Kanadese grens oorgesteek
die Kanadese grens oorgesteek
00:27
infecting more than
100 children in Quebec.
100 children in Quebec.
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en meer as 100 kinders
in Quebec is aangesteek.
in Quebec is aangesteek.
00:30
One of the tragic things
about this outbreak
about this outbreak
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Een van die tragiese dinge
van hierdie uitbraak
van hierdie uitbraak
00:33
is that measles, which can be fatal
to a child with a weakened immune system,
to a child with a weakened immune system,
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is dat masels, wat dodelik kan wees vir
'n kind met 'n verswakte immuunstelsel,
'n kind met 'n verswakte immuunstelsel,
00:39
is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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een van die maklikste voorkombare siektes
in die wêreld is.
in die wêreld is.
00:43
An effective vaccine against it
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'n Effektiewe entstof
00:45
has been available for more
than half a century,
than half a century,
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is al meer as 'n halfeeu beskikbaar,
00:48
but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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maar baie kinders wat deur
die Disneyland-uitbraak geraak is,
die Disneyland-uitbraak geraak is,
00:51
had not been vaccinated
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was nie ingeënt nie,
00:53
because their parents were afraid
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omdat hulle ouers bang was
00:56
of something allegedly even worse:
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vir iets wat na bewering
erger kan wees:
erger kan wees:
00:59
autism.
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outisme.
01:00
But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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Maar wag 'n bietjie --
is die artikel wat die kontroversie
oor outisme en entstowwe uitgelok het
oor outisme en entstowwe uitgelok het
01:04
about autism and vaccines
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01:06
debunked, retracted,
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nie vals bewys, teruggetrek en
01:08
and branded a deliberate fraud
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as opsetlike bedrog uitgemaak
deur die British Medical Journal nie?
01:11
by the British Medical Journal?
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01:13
Don't most science-savvy people
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Weet die meeste wat wetenskap volg nie
01:15
know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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dat die teorie oor inenting en outisme
nonsens is nie?
nonsens is nie?
01:19
I think most of you do,
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Ek dink meeste van julle weet,
01:21
but millions of parents worldwide
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maar miljoene ouers regoor die wêreld
01:23
continue to fear that vaccines
put their kids at risk for autism.
put their kids at risk for autism.
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vrees steeds dat inentings 'n risiko
van outisme vir hulle kinders inhou.
van outisme vir hulle kinders inhou.
01:28
Why?
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Waarom?
Dis waarom.
01:30
Here's why.
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01:32
This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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Dié grafiek wys die toename in die
geskatte outisme voorkomssyfer oor tyd.
geskatte outisme voorkomssyfer oor tyd.
01:37
For most of the 20th century,
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Vir die grootste deel van die 20ste eeu
01:39
autism was considered
an incredibly rare condition.
an incredibly rare condition.
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is outisme beskou
as 'n baie seldsame toestand.
as 'n baie seldsame toestand.
01:43
The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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Die handvol sielkundiges en pediaters
wat al daarvan gehoor het,
wat al daarvan gehoor het,
01:46
figured they would get through
their entire careers
their entire careers
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het gereken dat hulle
hul loopbane sou voltooi
hul loopbane sou voltooi
01:49
without seeing a single case.
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sonder om 'n enkele geval teë te kom.
01:52
For decades, the prevalence estimates
remained stable
remained stable
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Beramings van die voorkomssyfer
het vir dekades stabiel gebly
het vir dekades stabiel gebly
01:55
at just three or four children in 10,000.
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op net drie of vier kinders uit 10 000.
01:58
But then, in the 1990s,
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Maar toe, in die 1990's,
02:00
the numbers started to skyrocket.
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het die syfers die hoogte ingeskiet.
02:03
Fundraising organizations
like Autism Speaks
like Autism Speaks
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Fondsinsamelingsorganisasies
soos Autism Speaks
soos Autism Speaks
02:06
routinely refer to autism as an epidemic,
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verwys gereeld na
outisme as 'n epidemie --
outisme as 'n epidemie --
02:09
as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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asof jy dit by 'n ander kind
by Disneyland kon kry.
by Disneyland kon kry.
02:13
So what's going on?
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So wat gaan aan?
02:14
If it isn't vaccines, what is it?
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As dit nie entstowwe is nie, wat is dit?
02:18
If you ask the folks down at
the Centers for Disease Control in Atlanta
the Centers for Disease Control in Atlanta
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As jy die mense by
die Centers for Disease Control in Atlanta vra,
02:22
what's going on,
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maak hulle staat op frases soos
"breër diagnostiese kriteria"
"breër diagnostiese kriteria"
02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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en "beter aantekening van gevalle"
02:28
and "better case finding"
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02:30
to explain these rising numbers.
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om die stygende getalle te verklaar.
02:32
But that kind of language
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Maar hierdie soort woorde
02:34
doesn't do much to allay
the fears of a young mother
the fears of a young mother
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doen min om 'n jong ma gerus te stel
02:37
who is searching her
two-year-old's face for eye contact.
two-year-old's face for eye contact.
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terwyl sy haar tweejarige se gesig
vir oogkontak bestudeer.
vir oogkontak bestudeer.
02:42
If the diagnostic criteria
had to be broadened,
had to be broadened,
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As dit nodig was om
die diagnostiese kriteria te verbreed,
die diagnostiese kriteria te verbreed,
02:45
why were they so narrow
in the first place?
in the first place?
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waarom was dit in die eerste plek so eng?
02:48
Why were cases of autism
so hard to find
so hard to find
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Waarom was dit so moeilik
om outismegevalle te vind
om outismegevalle te vind
02:51
before the 1990s?
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voor die 1990's?
02:53
Five years ago, I decided to try
to uncover the answers to these questions.
to uncover the answers to these questions.
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Ek het vyf jaar gelede besluit om
die antwoorde op hierdie vrae te ontbloot.
die antwoorde op hierdie vrae te ontbloot.
02:59
I learned that what happened
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Ek het agtergekom dat dít wat gebeur het
03:01
has less to do with the slow and cautious
progress of science
progress of science
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minder met trae en versigtige vooruitgang
in wetenskap te doen het
in wetenskap te doen het
03:05
than it does with the seductive
power of storytelling.
power of storytelling.
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as met die verloklike krag van stories.
03:08
For most of the 20th century,
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Vir die grootste deel van die 20ste eeu
03:10
clinicians told one story
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het klinici één storie vertel
03:13
about what autism is
and how it was discovered,
and how it was discovered,
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oor wat outisme is en hoe dit ontdek is,
03:16
but that story turned out to be wrong,
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maar daardie storie was toe verkeerd.
03:19
and the consequences of it
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Die nagevolge hiervan
03:21
are having a devastating impact
on global public health.
on global public health.
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het wêreldwyd 'n vernietigende uitwerking
op openbare gesondheid.
op openbare gesondheid.
03:25
There was a second,
more accurate story of autism
more accurate story of autism
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Daar was 'n tweede,
akkurater storie van outisme
akkurater storie van outisme
03:28
which had been lost and forgotten
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wat verlore en vergete geraak het
03:31
in obscure corners
of the clinical literature.
of the clinical literature.
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in die duister hoekies van
kliniese literatuur.
kliniese literatuur.
03:34
This second story tells us everything
about how we got here
about how we got here
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Dié tweede storie vertel ons alles
oor hoe ons hier gekom het
oor hoe ons hier gekom het
03:38
and where we need to go next.
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en waarheen ons
volgende moet gaan.
volgende moet gaan.
03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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Eerste het ons 'n kinderpsigiater
by Johns Hopkins-Hospitaal,
by Johns Hopkins-Hospitaal,
03:45
named Leo Kanner.
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Leo Kanner.
03:47
In 1943, Kanner published a paper
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Kanner het in 1943
'n artikel gepubliseer
'n artikel gepubliseer
03:51
describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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waarin hy 11 jong pasiënte beskryf
wat gelyk het of hulle
wat gelyk het of hulle
in hulle eie wêrelde leef
en diegene om hulle,
en diegene om hulle,
03:56
ignoring the people around them,
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03:58
even their own parents.
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selfs hul eie ouers,
ignoreer.
ignoreer.
04:00
They could amuse themselves for hours
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Hulle kon hulself vir ure vermaak
04:02
by flapping their hands
in front of their faces,
in front of their faces,
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deur hulle hande
voor hulle gesigte te waai,
voor hulle gesigte te waai,
04:05
but they were panicked by little things
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maar klein dingetjies
het hulle ontstel,
het hulle ontstel,
04:07
like their favorite toy
being moved from its usual place
being moved from its usual place
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soos 'n gunstelingspeelding wat
uit sy gewone plek geskuif is
uit sy gewone plek geskuif is
04:10
without their knowledge.
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sonder hulle medewete.
04:12
Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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Gebaseer op die pasiënte
wat na Kanner toe gebring is,
wat na Kanner toe gebring is,
04:15
Kanner speculated
that autism is very rare.
that autism is very rare.
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het hy uitgereken
dat outisme baie skaars is.
dat outisme baie skaars is.
04:19
By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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Teen die 1950's het hy, as die wêreld
se grootste kenner op dié gebied,
se grootste kenner op dié gebied,
04:23
he declared that he had seen
less than 150 true cases of his syndrome
less than 150 true cases of his syndrome
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verklaar dat hy minder as 150 ware gevalle
van hierdie sindroom gesien het,
van hierdie sindroom gesien het,
04:29
while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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terwyl hy verwysings van plekke
so ver as Suid-Afrika hanteer het.
so ver as Suid-Afrika hanteer het.
04:33
That's actually not surprising,
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Dis nie so verbasend nie,
04:35
because Kanner's criteria
for diagnosing autism
for diagnosing autism
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want Kanner se kriteria
vir die diagnosering van outisme
vir die diagnosering van outisme
04:39
were incredibly selective.
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was ongelooflik selektief.
04:41
For example, he discouraged giving
the diagnosis to children who had seizures
the diagnosis to children who had seizures
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Hy het dit bv. ontmoedig om kinders
te diagnoseer wat aanvalle gekry het,
te diagnoseer wat aanvalle gekry het,
04:46
but now we know that epilepsy
is very common in autism.
is very common in autism.
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maar nou weet ons dat epilepsie
algemeen voorkom by outistiese pasiënte.
algemeen voorkom by outistiese pasiënte.
04:50
He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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Hy het een keer gespog
dat hy nege uit tien kinders
dat hy nege uit tien kinders
04:53
referred to his office as autistic
by other clinicians
by other clinicians
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wat deur ander klinici
as outistiese gevalle na hom verwys is,
as outistiese gevalle na hom verwys is,
04:57
without giving them an autism diagnosis.
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weggestuur het
sonder 'n outismediagnose.
sonder 'n outismediagnose.
05:00
Kanner was a smart guy,
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Kanner was 'n slim man,
maar van sy teorieë
het nie sin gemaak nie.
het nie sin gemaak nie.
05:02
but a number of his theories
didn't pan out.
didn't pan out.
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05:05
He classified autism as a form
of infantile psychosis
of infantile psychosis
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Hy het outisme as 'n vorm
van kinderpsigose geklassifiseer
van kinderpsigose geklassifiseer
05:08
caused by cold and unaffectionate parents.
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wat deur koue en liefdelose ouers
veroorsaak word.
veroorsaak word.
05:12
These children, he said,
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"Hierdie kinders," het hy gesê,
05:14
had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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"is in 'n yskas grootgemaak
wat nooit ontvries nie."
wat nooit ontvries nie."
05:19
At the same time, however,
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Terselftertyd het Kanner
egter waargeneem
egter waargeneem
05:21
Kanner noticed that some
of his young patients
of his young patients
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dat sommige van sy jong pasiënte
05:24
had special abilities
that clustered in certain areas
that clustered in certain areas
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spesiale vaardighede gehad het
wat op sekere gebiede voorgekom het,
wat op sekere gebiede voorgekom het,
05:27
like music, math and memory.
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soos musiek, wiskunde en geheue.
05:30
One boy in his clinic
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Een seuntjie in sy kliniek
05:32
could distinguish between 18 symphonies
before he turned two.
before he turned two.
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kon 18 verskillende simfonieë onderskei
voor hy twee was.
voor hy twee was.
05:37
When his mother put on
one of his favorite records,
one of his favorite records,
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As sy ma een van
sy gunsteling-opnames gespeel het,
sy gunsteling-opnames gespeel het,
05:40
he would correctly declare,
"Beethoven!"
"Beethoven!"
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sou hy korrek uitroep:
"Beethoven!"
"Beethoven!"
05:43
But Kanner took a dim view
of these abilities,
of these abilities,
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Maar Kanner het nie belanggestel
in hierdie talente nie
in hierdie talente nie
05:46
claiming that the kids
were just regurgitating things
were just regurgitating things
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en het gemeen dat die kinders
bloot herhaal het
bloot herhaal het
05:50
they'd heard their pompous parents say,
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wat hulle by hulle aanstellerige
ouers gehoor het --
ouers gehoor het --
05:52
desperate to earn their approval.
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desperaat vir dié se goedkeuring.
05:55
As a result, autism became
a source of shame and stigma for families,
a source of shame and stigma for families,
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Gevolglik het outisme 'n bron
van verleentheid en stigma geword
van verleentheid en stigma geword
06:00
and two generations of autistic children
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en twee generasies
outistiese kinders
outistiese kinders
06:03
were shipped off to institutions
for their own good,
for their own good,
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is weggestuur na inrigtings,
vir hulle eie beswil.
vir hulle eie beswil.
06:06
becoming invisible to the world at large.
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Sodoende het hulle onsigbaar geword
vir die meeste mense.
vir die meeste mense.
06:10
Amazingly, it wasn't until the 1970s
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Glo dit of nie,
navorsers het eers in die 1970's
navorsers het eers in die 1970's
06:14
that researchers began to test
Kanner's theory that autism was rare.
Kanner's theory that autism was rare.
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begin om Kanner se teorie
dat outisme skaars is, te toets.
dat outisme skaars is, te toets.
06:19
Lorna Wing was a cognitive
psychologist in London
psychologist in London
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Lorna Wing was
'n kognitiewe sielkundige in Londen
'n kognitiewe sielkundige in Londen
06:23
who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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wat gedink het Kanner se teorie
oor yskasouerskap
oor yskasouerskap
06:26
were "bloody stupid," as she told me.
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"loutere onsin" is,
soos sy vir my gesê het.
soos sy vir my gesê het.
06:29
She and her husband John were warm
and affectionate people,
and affectionate people,
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Sy en haar man John
was warm en liefdevolle mense
was warm en liefdevolle mense
06:33
and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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en hulle dogter Susie was erg outisties.
06:37
Lorna and John knew how hard it was
to raise a child like Susie
to raise a child like Susie
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Lorna en John het geweet hoe moeilik dit
was om 'n kind soos Susie groot te maak
was om 'n kind soos Susie groot te maak
06:41
without support services,
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sonder ondersteuningsdienste,
06:43
special education,
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spesiale onderrig,
06:45
and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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en die ander hulpbronne
wat buite bereik is sonder 'n diagnose.
wat buite bereik is sonder 'n diagnose.
06:49
To make the case
to the National Health Service
to the National Health Service
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Om hulle saak
by die National Health Service te stel,
by die National Health Service te stel,
06:52
that more resources were needed
for autistic children and their families,
for autistic children and their families,
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dat meer hulpbronne nodig was
vir outistiese kinders en hulle gesinne,
vir outistiese kinders en hulle gesinne,
06:57
Lorna and her colleague Judith Gould
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het Lorna en haar kollega Judith Gould
06:59
decided to do something that should
have been done 30 years earlier.
have been done 30 years earlier.
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besluit om te doen wat
30 jaar tevore nodig was:
30 jaar tevore nodig was:
07:04
They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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'n studie oor die voorkoms van outisme
onder die algemene bevolking.
onder die algemene bevolking.
07:09
They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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Hulle het die strate van Camberwell,
'n Londense voorstad, deurkruis
'n Londense voorstad, deurkruis
07:13
to try to find autistic children
in the community.
in the community.
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om outistiese kinders
in die gemeenskap op te spoor.
in die gemeenskap op te spoor.
07:17
What they saw made clear
that Kanner's model was way too narrow,
that Kanner's model was way too narrow,
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Wat hulle gesien het, het Kanner se model
as veels te eng bewys
as veels te eng bewys
07:21
while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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en dat outisme in werklikheid
baie meer kleurvol en divers was.
baie meer kleurvol en divers was.
07:26
Some kids couldn't talk at all,
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Sommige kinders kon glad nie praat nie,
07:28
while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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terwyl ander aangegaan het oor
hulle aangetrokkenheid tot astrofisika,
hulle aangetrokkenheid tot astrofisika,
07:33
dinosaurs or the genealogy of royalty.
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dinosourusse of koninklikes se stambome.
07:37
In other words, these children
didn't fit into nice, neat boxes,
didn't fit into nice, neat boxes,
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Hierdie kinders het nie
in netjiese bokse ingepas nie,
in netjiese bokse ingepas nie,
07:42
as Judith put it,
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soos Judith dit gestel het.
07:43
and they saw lots of them,
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En hulle het baie gesien:
07:45
way more than Kanner's monolithic model
would have predicted.
would have predicted.
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baie meer as wat Kanner
se monolitiese model voorspel het.
se monolitiese model voorspel het.
07:49
At first, they were at a loss
to make sense of their data.
to make sense of their data.
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Aanvanklik het hulle nie geweet
hoe om die data te interpreteer nie.
hoe om die data te interpreteer nie.
07:53
How had no one noticed
these children before?
these children before?
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Hoe het niemand
ooit dié kinders gesien nie?
ooit dié kinders gesien nie?
07:56
But then Lorna came upon a reference
to a paper that had been published
to a paper that had been published
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Maar toe kom Lorna af op
'n verwysing na 'n artikel
'n verwysing na 'n artikel
wat in 1944 in Duits gepubliseer is --
07:59
in German in 1944,
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08:02
the year after Kanner's paper,
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die jaar na Kanner se artikel --
08:04
and then forgotten,
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en toe vergeet en begrawe is
08:06
buried with the ashes of a terrible time
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saam met die bomskerwe
van 'n vreeslike tyd
van 'n vreeslike tyd
08:09
that no one wanted to remember
or think about.
or think about.
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wat niemand wou onthou
of aan dink nie.
of aan dink nie.
08:12
Kanner knew about this competing paper,
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Kanner het geweet van
dié mededingende artikel,
dié mededingende artikel,
08:15
but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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maar het dit versigtig vermy
in sy eie werk.
in sy eie werk.
Dis nooit eers in Engels vertaal nie,
08:19
It had never even
been translated into English,
been translated into English,
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08:22
but luckily, Lorna's husband spoke German,
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maar gelukkig het Lorna
se man Duits gepraat
se man Duits gepraat
08:25
and he translated it for her.
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en hy het dit vir haar vertaal.
08:27
The paper offered
an alternate story of autism.
an alternate story of autism.
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Die artikel het 'n ander storie
oor outisme gebied.
oor outisme gebied.
08:31
Its author was a man named Hans Asperger,
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Die outeur was Hans Asperger,
08:34
who ran a combination clinic
and residential school
and residential school
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wat 'n gekombineerde kliniek en kosskool
08:37
in Vienna in the 1930s.
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in Wene in die 1930's bedryf het.
08:40
Asperger's ideas about teaching children
with learning differences
with learning differences
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Asperger se idees oor die onderrig van
kinders met leerverskille was progressief,
kinders met leerverskille was progressief,
08:44
were progressive even
by contemporary standards.
by contemporary standards.
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selfs gemeet teen hedendaagse standaarde.
08:47
Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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Die oggende by sy kliniek het begin
met oefenklasse met musiek,
met oefenklasse met musiek,
08:51
and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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en op Sondaemiddae
het die kinders konsert gehou.
het die kinders konsert gehou.
08:55
Instead of blaming parents
for causing autism,
for causing autism,
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In plaas daarvan om ouers
die skuld vir outisme te gee,
die skuld vir outisme te gee,
08:58
Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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het Asperger dit as 'n lewenslange,
poligenetiese gestremdheid beskryf
poligenetiese gestremdheid beskryf
09:03
that requires compassionate forms
of support and accommodations
of support and accommodations
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wat deernisvolle vorms
van ondersteuning en aanpassing
van ondersteuning en aanpassing
09:07
over the course of one's whole life.
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oor 'n persoon se hele lewe vereis.
Eerder as om die kinders
as pasiënte te behandel,
as pasiënte te behandel,
09:10
Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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09:13
Asperger called them
his little professors,
his little professors,
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het Asperger hulle
sy "klein professors" genoem
sy "klein professors" genoem
09:16
and enlisted their help in developing
methods of education
methods of education
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en hulle hulp gevra om
onderrigmetodes te ontwikkel
onderrigmetodes te ontwikkel
09:20
that were particularly suited to them.
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wat besonderlik vir hulle geskik was.
09:22
Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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Die belangrikste is dat Asperger outisme
as 'n diverse kontinuum beskou het
as 'n diverse kontinuum beskou het
09:28
that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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wat oor 'n ongelooflike spektrum
van begaafdheid en gestremdheid strek.
van begaafdheid en gestremdheid strek.
09:33
He believed that autism
and autistic traits are common
and autistic traits are common
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3532
Hy het geglo dat outisme en
outistiese karaktertrekke
outistiese karaktertrekke
algemeen is en nog altyd was,
09:37
and always have been,
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1866
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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5294
met aspekte daarvan wat gesien word
in bekende popkultuur argetipes,
in bekende popkultuur argetipes,
09:44
like the socially awkward scientist
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2336
soos die sosiaal onbeholpe wetenskaplike
09:46
and the absent-minded professor.
178
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2694
en die verstrooide professor.
09:49
He went so far as to say,
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Hy het so ver gegaan om te sê
09:51
it seems that for success
in science and art,
in science and art,
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3227
dat om suksesvol
in wetenskap en die kunste te wees
in wetenskap en die kunste te wees
09:54
a dash of autism is essential.
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2946
'n tikkie outisme vereis.
09:58
Lorna and Judith realized that Kanner
had been as wrong about autism being rare
had been as wrong about autism being rare
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4922
Lorna en Judith het besef dat Kanner
net so verkeerd was oor die raarheid van outisme
as oor dat ouers dit veroorsaak het.
as oor dat ouers dit veroorsaak het.
10:03
as he had been about parents causing it.
183
591214
2693
10:05
Over the next several years,
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2044
Oor die volgende jare
10:07
they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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3413
het hulle saam met
die American Psychiatric Association gewerk
die American Psychiatric Association gewerk
10:11
to broaden the criteria for diagnosis
186
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2600
om die kriteria vir diagnose te verbreed
10:13
to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
187
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4017
om die diversiteit van die
"outismespektrum" te weerspieël.
"outismespektrum" te weerspieël.
10:17
In the late '80s and early 1990s,
188
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2578
In die laat 1980's en vroeë 90's
10:20
their changes went into effect,
189
608559
2298
is hulle veranderinge in werking gestel:
10:22
swapping out Kanner's narrow model
190
610857
2369
Kanner se eng model is vervang
10:25
for Asperger's broad and inclusive one.
191
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3575
met Asperger se breë en inklusiewe een.
10:28
These changes weren't
happening in a vacuum.
happening in a vacuum.
192
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2671
Dié veranderinge het nie
afgesonderd plaasgevind nie.
afgesonderd plaasgevind nie.
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
193
619472
3854
Toevallig, soos Lorna en Judith
agter die skerms aan die werk was
agter die skerms aan die werk was
10:35
to reform the criteria,
194
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1834
om die kriteria aan te pas,
10:37
people all over the world were seeing
an autistic adult for the first time.
an autistic adult for the first time.
195
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het die wêreld die eerste keer
'n outistiese grootmens gesien.
'n outistiese grootmens gesien.
10:42
Before "Rain Man" came out in 1988,
196
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3374
Voor "Rain Man" in 1988 uitgekom het,
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
197
633550
4659
het net 'n klein, geslote groepie kundiges
geweet hoe outisme lyk,
geweet hoe outisme lyk,
10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
198
638209
4760
maar na Dustin Hoffman se onvergeetlike
optrede as Raymond Babbitt
optrede as Raymond Babbitt
10:54
earned "Rain Man" four Academy Awards,
199
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3135
vier Oscars vir "Rain Man" ingepalm het,
10:58
pediatricians, psychologists,
200
646104
2740
het pediaters, sielkundiges,
onderwysers en ouers wêreldwyd
onderwysers en ouers wêreldwyd
11:00
teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
201
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4690
geweet hoe outisme lyk.
11:05
Coincidentally, at the same time,
202
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2925
En op dieselfde tyd
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
203
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5130
is die eerste maklike kliniese toetse
vir die diagnose van outisme bekendgestel.
vir die diagnose van outisme bekendgestel.
11:13
You no longer had to have a connection
to that tiny circle of experts
to that tiny circle of experts
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661939
4690
Dit was nie meer nodig om iemand
in die kringetjie kundiges te ken
in die kringetjie kundiges te ken
11:18
to get your child evaluated.
205
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2578
om jou kind te laat evalueer nie.
11:21
The combination of "Rain Man,"
206
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2113
Die kombinasie van "Rain Man",
11:23
the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
207
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4179
die veranderinge aan die kriteria
en die ingebruikneming van hierdie toetse
en die ingebruikneming van hierdie toetse
11:27
created a network effect,
208
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2275
het 'n netwerk-effek geskep --
11:29
a perfect storm of autism awareness.
209
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3530
die perfekte kombinasie van faktore
vir outisme-bewusmaking.
vir outisme-bewusmaking.
11:33
The number of diagnoses started to soar,
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3018
Die aantal diagnoses het begin klim,
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
211
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5668
net soos Lorna en Judith voorspel het
en gehoop het dit sou,
en gehoop het dit sou,
wat outistiese mense en hulle gesinne
in staat gestel het
in staat gestel het
11:41
enabling autistic people
and their families
and their families
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689990
2116
11:44
to finally get the support
and services they deserved.
and services they deserved.
213
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3692
om eindelik die ondersteuning en dienste
te kry wat hulle verdien.
te kry wat hulle verdien.
11:47
Then Andrew Wakefield came along
214
695798
2066
Toe kom Andrew Wakefield
11:49
to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
215
697864
3855
en blameer entstowwe
vir die styging in diagnoses --
vir die styging in diagnoses --
11:53
a simple, powerful,
216
701719
2113
'n eenvoudige, kragtige,
11:55
and seductively believable story
217
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2786
en verleidelik geloofbare storie
11:58
that was as wrong as Kanner's theory
218
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2368
wat net so verkeerd was soos
12:00
that autism was rare.
219
708986
2253
Kanner se teorie dat outisme skaars was.
12:03
If the CDC's current estimate,
220
711239
3471
As die Centers for Disease Control
se huidige skatting,
se huidige skatting,
12:06
that one in 68 kids in America
are on the spectrum, is correct,
are on the spectrum, is correct,
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4423
dat een uit 68 kinders in Amerika
op die spektrum is, korrek is,
op die spektrum is, korrek is,
12:11
autistics are one of the largest
minority groups in the world.
minority groups in the world.
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4207
is outistiese mense een van die grootste
minderheidsgroepe in die wêreld.
minderheidsgroepe in die wêreld.
12:15
In recent years, autistic people
have come together on the Internet
have come together on the Internet
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3827
Outistiese mense het in die laaste jare
bymekaargekom op die internet
bymekaargekom op die internet
12:19
to reject the notion that they
are puzzles to be solved
are puzzles to be solved
224
727167
3645
om die idee te verwerp dat
hulle raaisels is wat opgelos moet word
hulle raaisels is wat opgelos moet word
12:22
by the next medical breakthrough,
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730812
2183
deur die volgende mediese deurbraak,
12:24
coining the term "neurodiversity"
226
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2461
en hulle het die term
"neurodiversiteit" geskep
"neurodiversiteit" geskep
12:27
to celebrate the varieties
of human cognition.
of human cognition.
227
735456
3288
om hulle trots oor die veelsydigheid
van menslike kognisie te toon.
van menslike kognisie te toon.
12:31
One way to understand neurodiversity
228
739264
2391
'n Manier om neurodiversiteit te verstaan,
12:33
is to think in terms
of human operating systems.
of human operating systems.
229
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3669
is om in terme van
menslike bedryfstelsels te dink.
menslike bedryfstelsels te dink.
12:37
Just because a P.C. is not running Windows
doesn't mean that it's broken.
doesn't mean that it's broken.
230
745324
4916
As 'n rekenaar nie met Windows loop nie,
is dit nie noodwendig stukkend nie.
is dit nie noodwendig stukkend nie.
12:42
By autistic standards,
the normal human brain
the normal human brain
231
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3629
Volgens outistiese standaarde,
is die normale menslike brein
is die normale menslike brein
12:45
is easily distractable,
232
753869
2020
maklik afleibaar,
12:47
obsessively social,
233
755889
1788
obsessief oor sosiale aspekte
12:49
and suffers from a deficit
of attention to detail.
of attention to detail.
234
757677
3320
en skiet dit tekort
by aandag aan klein besonderhede.
by aandag aan klein besonderhede.
12:52
To be sure, autistic people
have a hard time
have a hard time
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760997
2995
Dis moeilik vir outistiese mense
om in 'n wêreld te leef
om in 'n wêreld te leef
12:55
living in a world not built for them.
236
763992
2276
wat nie vir hulle gemaak is nie.
12:58
[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
237
766268
4252
[Sewentig] jaar later probeer ons steeds
vir Asperger inhaal,
vir Asperger inhaal,
13:02
who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
238
770520
4083
wat geglo het dat die "genesing"
vir die moeilikste aspekte van outisme
vir die moeilikste aspekte van outisme
13:06
is to be found in understanding teachers,
239
774603
2926
gevind kan word in onderwysers met begrip,
13:09
accommodating employers,
240
777529
2136
toegeeflike werkgewers,
13:11
supportive communities,
241
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1857
ondersteunende gemeenskappe
13:13
and parents who have faith
in their children's potential.
in their children's potential.
242
781522
3344
en ouers wat glo
in hulle kinders se potensiaal.
in hulle kinders se potensiaal.
13:16
An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
243
784866
3042
'n Outistiese [man],
Zosia Zaks, het gesê:
Zosia Zaks, het gesê:
13:19
"We need all hands on deck
to right the ship of humanity."
to right the ship of humanity."
244
787908
5303
"Ons het almal aan dek nodig om die skip
van medemenslikheid op koers te hou."
van medemenslikheid op koers te hou."
13:25
As we sail into an uncertain future,
245
793211
2553
Soos ons 'n onseker toekoms invaar,
13:27
we need every form
of human intelligence on the planet
of human intelligence on the planet
246
795764
3738
het ons elke vorm van
menslike intelligensie nodig
menslike intelligensie nodig
13:31
working together to tackle
the challenges that we face as a society.
the challenges that we face as a society.
247
799502
5967
om saam te werk om die probleme op te los
wat ons samelewing in die gesig staar.
wat ons samelewing in die gesig staar.
13:37
We can't afford to waste a brain.
248
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2322
Ons kan nie bekostig om
'n brein te mors nie.
'n brein te mors nie.
13:39
Thank you.
249
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2345
Dankie.
13:42
(Applause)
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(Applous)
ABOUT THE SPEAKER
Steve Silberman - Writer and editorSteve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius.
Why you should listen
Steve Silberman is a writer and contributing editor for Wired and other national magazines. In 2001, he published "The Geek Syndrome," one of the first articles in the mainstream press to probe the complex relationship between autism and genius. The article was praised by experts in the field like neurologist Oliver Sacks and author Temple Grandin, but as time went on, Silberman was haunted by the biggest question that he had left unanswered: Why have rates of autism diagnosis increased so steeply in the past 30 years?
This question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
More profile about the speakerThis question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
Steve Silberman | Speaker | TED.com