Steve Silberman: The forgotten history of autism

Translator: Anneline Du Preez Reviewer: Ingrid Lezar

Just after Christmas last year,

Net na Kersfees verlede jaar

132 kids in California got the measles

het 132 kinders in Kalifornië masels gekry

by either visiting Disneyland

deur Disneyland te besoek

or being exposed to someone who'd been there.

of blootgestel te word aan iemand wat daar was.

The virus then hopped the Canadian border,

Die virus het toe die Kanadese grens oorgesteek

infecting more than 100 children in Quebec.

en meer as 100 kinders in Quebec is aangesteek.

One of the tragic things about this outbreak

Een van die tragiese dinge van hierdie uitbraak

is that measles, which can be fatal to a child with a weakened immune system,

is dat masels, wat dodelik kan wees vir 'n kind met 'n verswakte immuunstelsel,

is one of the most easily preventable diseases in the world.

een van die maklikste voorkombare siektes in die wêreld is.

An effective vaccine against it

'n Effektiewe entstof

has been available for more than half a century,

is al meer as 'n halfeeu beskikbaar,

but many of the kids involved in the Disneyland outbreak

maar baie kinders wat deur die Disneyland-uitbraak geraak is,

had not been vaccinated

was nie ingeënt nie,

because their parents were afraid

omdat hulle ouers bang was

of something allegedly even worse:

vir iets wat na bewering erger kan wees:

autism.

outisme.

But wait -- wasn't the paper that sparked the controversy

Maar wag 'n bietjie --

is die artikel wat die kontroversie oor outisme en entstowwe uitgelok het

about autism and vaccines

debunked, retracted,

nie vals bewys, teruggetrek en

and branded a deliberate fraud

as opsetlike bedrog uitgemaak

by the British Medical Journal?

deur die British Medical Journal nie?

Don't most science-savvy people

Weet die meeste wat wetenskap volg nie

know that the theory that vaccines cause autism is B.S.?

dat die teorie oor inenting en outisme nonsens is nie?

I think most of you do,

Ek dink meeste van julle weet,

but millions of parents worldwide

maar miljoene ouers regoor die wêreld

continue to fear that vaccines put their kids at risk for autism.

vrees steeds dat inentings 'n risiko van outisme vir hulle kinders inhou.

Why?

Waarom?

Here's why.

Dis waarom.

This is a graph of autism prevalence estimates rising over time.

Dié grafiek wys die toename in die geskatte outisme voorkomssyfer oor tyd.

For most of the 20th century,

Vir die grootste deel van die 20ste eeu

autism was considered an incredibly rare condition.

is outisme beskou as 'n baie seldsame toestand.

The few psychologists and pediatricians who'd even heard of it

Die handvol sielkundiges en pediaters wat al daarvan gehoor het,

figured they would get through their entire careers

het gereken dat hulle hul loopbane sou voltooi

without seeing a single case.

sonder om 'n enkele geval teë te kom.

For decades, the prevalence estimates remained stable

Beramings van die voorkomssyfer het vir dekades stabiel gebly

at just three or four children in 10,000.

op net drie of vier kinders uit 10 000.

But then, in the 1990s,

Maar toe, in die 1990's,

the numbers started to skyrocket.

het die syfers die hoogte ingeskiet.

Fundraising organizations like Autism Speaks

Fondsinsamelingsorganisasies soos Autism Speaks

routinely refer to autism as an epidemic,

verwys gereeld na outisme as 'n epidemie --

as if you could catch it from another kid at Disneyland.

asof jy dit by 'n ander kind by Disneyland kon kry.

So what's going on?

So wat gaan aan?

If it isn't vaccines, what is it?

As dit nie entstowwe is nie, wat is dit?

If you ask the folks down at the Centers for Disease Control in Atlanta

As jy die mense by

die Centers for Disease Control in Atlanta vra,

what's going on,

they tend to rely on phrases like "broadened diagnostic criteria"

maak hulle staat op frases soos "breër diagnostiese kriteria"

and "better case finding"

en "beter aantekening van gevalle"

to explain these rising numbers.

om die stygende getalle te verklaar.

But that kind of language

Maar hierdie soort woorde

doesn't do much to allay the fears of a young mother

doen min om 'n jong ma gerus te stel

who is searching her two-year-old's face for eye contact.

terwyl sy haar tweejarige se gesig vir oogkontak bestudeer.

If the diagnostic criteria had to be broadened,

As dit nodig was om die diagnostiese kriteria te verbreed,

why were they so narrow in the first place?

waarom was dit in die eerste plek so eng?

Why were cases of autism so hard to find

Waarom was dit so moeilik om outismegevalle te vind

before the 1990s?

voor die 1990's?

Five years ago, I decided to try to uncover the answers to these questions.

Ek het vyf jaar gelede besluit om die antwoorde op hierdie vrae te ontbloot.

I learned that what happened

Ek het agtergekom dat dít wat gebeur het

has less to do with the slow and cautious progress of science

minder met trae en versigtige vooruitgang in wetenskap te doen het

than it does with the seductive power of storytelling.

as met die verloklike krag van stories.

For most of the 20th century,

Vir die grootste deel van die 20ste eeu

clinicians told one story

het klinici één storie vertel

about what autism is and how it was discovered,

oor wat outisme is en hoe dit ontdek is,

but that story turned out to be wrong,

maar daardie storie was toe verkeerd.

and the consequences of it

Die nagevolge hiervan

are having a devastating impact on global public health.

het wêreldwyd 'n vernietigende uitwerking op openbare gesondheid.

There was a second, more accurate story of autism

Daar was 'n tweede, akkurater storie van outisme

which had been lost and forgotten

wat verlore en vergete geraak het

in obscure corners of the clinical literature.

in die duister hoekies van kliniese literatuur.

This second story tells us everything about how we got here

Dié tweede storie vertel ons alles oor hoe ons hier gekom het

and where we need to go next.

en waarheen ons volgende moet gaan.

The first story starts with a child psychiatrist at Johns Hopkins Hospital

Eerste het ons 'n kinderpsigiater by Johns Hopkins-Hospitaal,

named Leo Kanner.

Leo Kanner.

In 1943, Kanner published a paper

Kanner het in 1943 'n artikel gepubliseer

describing 11 young patients who seemed to inhabit private worlds,

waarin hy 11 jong pasiënte beskryf wat gelyk het of hulle

in hulle eie wêrelde leef en diegene om hulle,

ignoring the people around them,

even their own parents.

selfs hul eie ouers, ignoreer.

They could amuse themselves for hours

Hulle kon hulself vir ure vermaak

by flapping their hands in front of their faces,

deur hulle hande voor hulle gesigte te waai,

but they were panicked by little things

maar klein dingetjies het hulle ontstel,

like their favorite toy being moved from its usual place

soos 'n gunstelingspeelding wat uit sy gewone plek geskuif is

without their knowledge.

sonder hulle medewete.

Based on the patients who were brought to his clinic,

Gebaseer op die pasiënte wat na Kanner toe gebring is,

Kanner speculated that autism is very rare.

het hy uitgereken dat outisme baie skaars is.

By the 1950s, as the world's leading authority on the subject,

Teen die 1950's het hy, as die wêreld se grootste kenner op dié gebied,

he declared that he had seen less than 150 true cases of his syndrome

verklaar dat hy minder as 150 ware gevalle van hierdie sindroom gesien het,

while fielding referrals from as far away as South Africa.

terwyl hy verwysings van plekke so ver as Suid-Afrika hanteer het.

That's actually not surprising,

Dis nie so verbasend nie,

because Kanner's criteria for diagnosing autism

want Kanner se kriteria vir die diagnosering van outisme

were incredibly selective.

was ongelooflik selektief.

For example, he discouraged giving the diagnosis to children who had seizures

Hy het dit bv. ontmoedig om kinders te diagnoseer wat aanvalle gekry het,

but now we know that epilepsy is very common in autism.

maar nou weet ons dat epilepsie algemeen voorkom by outistiese pasiënte.

He once bragged that he had turned nine out of 10 kids

Hy het een keer gespog dat hy nege uit tien kinders

referred to his office as autistic by other clinicians

wat deur ander klinici as outistiese gevalle na hom verwys is,

without giving them an autism diagnosis.

weggestuur het sonder 'n outismediagnose.

Kanner was a smart guy,

Kanner was 'n slim man,

but a number of his theories didn't pan out.

maar van sy teorieë het nie sin gemaak nie.

He classified autism as a form of infantile psychosis

Hy het outisme as 'n vorm van kinderpsigose geklassifiseer

caused by cold and unaffectionate parents.

wat deur koue en liefdelose ouers veroorsaak word.

These children, he said,

"Hierdie kinders," het hy gesê,

had been kept neatly in a refrigerator that didn't defrost.

"is in 'n yskas grootgemaak wat nooit ontvries nie."

At the same time, however,

Terselftertyd het Kanner egter waargeneem

Kanner noticed that some of his young patients

dat sommige van sy jong pasiënte

had special abilities that clustered in certain areas

spesiale vaardighede gehad het wat op sekere gebiede voorgekom het,

like music, math and memory.

soos musiek, wiskunde en geheue.

One boy in his clinic

Een seuntjie in sy kliniek

could distinguish between 18 symphonies before he turned two.

kon 18 verskillende simfonieë onderskei voor hy twee was.

When his mother put on one of his favorite records,

As sy ma een van sy gunsteling-opnames gespeel het,

he would correctly declare, "Beethoven!"

sou hy korrek uitroep: "Beethoven!"

But Kanner took a dim view of these abilities,

Maar Kanner het nie belanggestel in hierdie talente nie

claiming that the kids were just regurgitating things

en het gemeen dat die kinders bloot herhaal het

they'd heard their pompous parents say,

wat hulle by hulle aanstellerige ouers gehoor het --

desperate to earn their approval.

desperaat vir dié se goedkeuring.

As a result, autism became a source of shame and stigma for families,

Gevolglik het outisme 'n bron van verleentheid en stigma geword

and two generations of autistic children

en twee generasies outistiese kinders

were shipped off to institutions for their own good,

is weggestuur na inrigtings, vir hulle eie beswil.

becoming invisible to the world at large.

Sodoende het hulle onsigbaar geword vir die meeste mense.

Amazingly, it wasn't until the 1970s

Glo dit of nie, navorsers het eers in die 1970's

that researchers began to test Kanner's theory that autism was rare.

begin om Kanner se teorie dat outisme skaars is, te toets.

Lorna Wing was a cognitive psychologist in London

Lorna Wing was 'n kognitiewe sielkundige in Londen

who thought that Kanner's theory of refrigerator parenting

wat gedink het Kanner se teorie oor yskasouerskap

were "bloody stupid," as she told me.

"loutere onsin" is, soos sy vir my gesê het.

She and her husband John were warm and affectionate people,

Sy en haar man John was warm en liefdevolle mense

and they had a profoundly autistic daughter named Susie.

en hulle dogter Susie was erg outisties.

Lorna and John knew how hard it was to raise a child like Susie

Lorna en John het geweet hoe moeilik dit was om 'n kind soos Susie groot te maak

without support services,

sonder ondersteuningsdienste,

special education,

spesiale onderrig,

and the other resources that are out of reach without a diagnosis.

en die ander hulpbronne wat buite bereik is sonder 'n diagnose.

To make the case to the National Health Service

Om hulle saak by die National Health Service te stel,

that more resources were needed for autistic children and their families,

dat meer hulpbronne nodig was vir outistiese kinders en hulle gesinne,

Lorna and her colleague Judith Gould

het Lorna en haar kollega Judith Gould

decided to do something that should have been done 30 years earlier.

besluit om te doen wat 30 jaar tevore nodig was:

They undertook a study of autism prevalence in the general population.

'n studie oor die voorkoms van outisme onder die algemene bevolking.

They pounded the pavement in a London suburb called Camberwell

Hulle het die strate van Camberwell, 'n Londense voorstad, deurkruis

to try to find autistic children in the community.

om outistiese kinders in die gemeenskap op te spoor.

What they saw made clear that Kanner's model was way too narrow,

Wat hulle gesien het, het Kanner se model as veels te eng bewys

while the reality of autism was much more colorful and diverse.

en dat outisme in werklikheid baie meer kleurvol en divers was.

Some kids couldn't talk at all,

Sommige kinders kon glad nie praat nie,

while others waxed on at length about their fascination with astrophysics,

terwyl ander aangegaan het oor hulle aangetrokkenheid tot astrofisika,

dinosaurs or the genealogy of royalty.

dinosourusse of koninklikes se stambome.

In other words, these children didn't fit into nice, neat boxes,

Hierdie kinders het nie in netjiese bokse ingepas nie,

as Judith put it,

soos Judith dit gestel het.

and they saw lots of them,

En hulle het baie gesien:

way more than Kanner's monolithic model would have predicted.

baie meer as wat Kanner se monolitiese model voorspel het.

At first, they were at a loss to make sense of their data.

Aanvanklik het hulle nie geweet hoe om die data te interpreteer nie.

How had no one noticed these children before?

Hoe het niemand ooit dié kinders gesien nie?

But then Lorna came upon a reference to a paper that had been published

Maar toe kom Lorna af op 'n verwysing na 'n artikel

wat in 1944 in Duits gepubliseer is --

in German in 1944,

the year after Kanner's paper,

die jaar na Kanner se artikel --

and then forgotten,

en toe vergeet en begrawe is

buried with the ashes of a terrible time

saam met die bomskerwe van 'n vreeslike tyd

that no one wanted to remember or think about.

wat niemand wou onthou of aan dink nie.

Kanner knew about this competing paper,

Kanner het geweet van dié mededingende artikel,

but scrupulously avoided mentioning it in his own work.

maar het dit versigtig vermy in sy eie werk.

It had never even been translated into English,

Dis nooit eers in Engels vertaal nie,

but luckily, Lorna's husband spoke German,

maar gelukkig het Lorna se man Duits gepraat

and he translated it for her.

en hy het dit vir haar vertaal.

The paper offered an alternate story of autism.

Die artikel het 'n ander storie oor outisme gebied.

Its author was a man named Hans Asperger,

Die outeur was Hans Asperger,

who ran a combination clinic and residential school

wat 'n gekombineerde kliniek en kosskool

in Vienna in the 1930s.

in Wene in die 1930's bedryf het.

Asperger's ideas about teaching children with learning differences

Asperger se idees oor die onderrig van kinders met leerverskille was progressief,

were progressive even by contemporary standards.

selfs gemeet teen hedendaagse standaarde.

Mornings at his clinic began with exercise classes set to music,

Die oggende by sy kliniek het begin met oefenklasse met musiek,

and the children put on plays on Sunday afternoons.

en op Sondaemiddae het die kinders konsert gehou.

Instead of blaming parents for causing autism,

In plaas daarvan om ouers die skuld vir outisme te gee,

Asperger framed it as a lifelong, polygenetic disability

het Asperger dit as 'n lewenslange, poligenetiese gestremdheid beskryf

that requires compassionate forms of support and accommodations

wat deernisvolle vorms van ondersteuning en aanpassing

over the course of one's whole life.

oor 'n persoon se hele lewe vereis.

Rather than treating the kids in his clinic like patients,

Eerder as om die kinders as pasiënte te behandel,

Asperger called them his little professors,

het Asperger hulle sy "klein professors" genoem

and enlisted their help in developing methods of education

en hulle hulp gevra om onderrigmetodes te ontwikkel

that were particularly suited to them.

wat besonderlik vir hulle geskik was.

Crucially, Asperger viewed autism as a diverse continuum

Die belangrikste is dat Asperger outisme as 'n diverse kontinuum beskou het

that spans an astonishing range of giftedness and disability.

wat oor 'n ongelooflike spektrum van begaafdheid en gestremdheid strek.

He believed that autism and autistic traits are common

Hy het geglo dat outisme en outistiese karaktertrekke

algemeen is en nog altyd was,

and always have been,

seeing aspects of this continuum in familiar archetypes from pop culture

met aspekte daarvan wat gesien word in bekende popkultuur argetipes,

like the socially awkward scientist

soos die sosiaal onbeholpe wetenskaplike

and the absent-minded professor.

en die verstrooide professor.

He went so far as to say,

Hy het so ver gegaan om te sê

it seems that for success in science and art,

dat om suksesvol in wetenskap en die kunste te wees

a dash of autism is essential.

'n tikkie outisme vereis.

Lorna and Judith realized that Kanner had been as wrong about autism being rare

Lorna en Judith het besef dat Kanner

net so verkeerd was oor die raarheid van outisme as oor dat ouers dit veroorsaak het.

as he had been about parents causing it.

Over the next several years,

Oor die volgende jare

they quietly worked with the American Psychiatric Association

het hulle saam met die American Psychiatric Association gewerk

to broaden the criteria for diagnosis

om die kriteria vir diagnose te verbreed

to reflect the diversity of what they called "the autism spectrum."

om die diversiteit van die "outismespektrum" te weerspieël.

In the late '80s and early 1990s,

In die laat 1980's en vroeë 90's

their changes went into effect,

is hulle veranderinge in werking gestel:

swapping out Kanner's narrow model

Kanner se eng model is vervang

for Asperger's broad and inclusive one.

met Asperger se breë en inklusiewe een.

These changes weren't happening in a vacuum.

Dié veranderinge het nie afgesonderd plaasgevind nie.

By coincidence, as Lorna and Judith worked behind the scenes

Toevallig, soos Lorna en Judith agter die skerms aan die werk was

to reform the criteria,

om die kriteria aan te pas,

people all over the world were seeing an autistic adult for the first time.

het die wêreld die eerste keer 'n outistiese grootmens gesien.

Before "Rain Man" came out in 1988,

Voor "Rain Man" in 1988 uitgekom het,

only a tiny, ingrown circle of experts knew what autism looked like,

het net 'n klein, geslote groepie kundiges geweet hoe outisme lyk,

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

maar na Dustin Hoffman se onvergeetlike optrede as Raymond Babbitt

earned "Rain Man" four Academy Awards,

vier Oscars vir "Rain Man" ingepalm het,

pediatricians, psychologists,

het pediaters, sielkundiges, onderwysers en ouers wêreldwyd

teachers and parents all over the world knew what autism looked like.

geweet hoe outisme lyk.

Coincidentally, at the same time,

En op dieselfde tyd

the first easy-to-use clinical tests for diagnosing autism were introduced.

is die eerste maklike kliniese toetse vir die diagnose van outisme bekendgestel.

You no longer had to have a connection to that tiny circle of experts

Dit was nie meer nodig om iemand in die kringetjie kundiges te ken

to get your child evaluated.

om jou kind te laat evalueer nie.

The combination of "Rain Man,"

Die kombinasie van "Rain Man",

the changes to the criteria, and the introduction of these tests

die veranderinge aan die kriteria en die ingebruikneming van hierdie toetse

created a network effect,

het 'n netwerk-effek geskep --

a perfect storm of autism awareness.

die perfekte kombinasie van faktore vir outisme-bewusmaking.

The number of diagnoses started to soar,

Die aantal diagnoses het begin klim,

just as Lorna and Judith predicted, indeed hoped, that it would,

net soos Lorna en Judith voorspel het en gehoop het dit sou,

enabling autistic people and their families

wat outistiese mense en hulle gesinne in staat gestel het

to finally get the support and services they deserved.

om eindelik die ondersteuning en dienste te kry wat hulle verdien.

Then Andrew Wakefield came along

Toe kom Andrew Wakefield

to blame the spike in diagnoses on vaccines,

en blameer entstowwe vir die styging in diagnoses --

a simple, powerful,

'n eenvoudige, kragtige,

and seductively believable story

en verleidelik geloofbare storie

that was as wrong as Kanner's theory

wat net so verkeerd was soos

that autism was rare.

Kanner se teorie dat outisme skaars was.

If the CDC's current estimate,

As die Centers for Disease Control se huidige skatting,

that one in 68 kids in America are on the spectrum, is correct,

dat een uit 68 kinders in Amerika op die spektrum is, korrek is,

autistics are one of the largest minority groups in the world.

is outistiese mense een van die grootste minderheidsgroepe in die wêreld.

In recent years, autistic people have come together on the Internet

Outistiese mense het in die laaste jare bymekaargekom op die internet

to reject the notion that they are puzzles to be solved

om die idee te verwerp dat hulle raaisels is wat opgelos moet word

by the next medical breakthrough,

deur die volgende mediese deurbraak,

coining the term "neurodiversity"

en hulle het die term "neurodiversiteit" geskep

to celebrate the varieties of human cognition.

om hulle trots oor die veelsydigheid van menslike kognisie te toon.

One way to understand neurodiversity

'n Manier om neurodiversiteit te verstaan,

is to think in terms of human operating systems.

is om in terme van menslike bedryfstelsels te dink.

Just because a P.C. is not running Windows doesn't mean that it's broken.

As 'n rekenaar nie met Windows loop nie, is dit nie noodwendig stukkend nie.

By autistic standards, the normal human brain

Volgens outistiese standaarde, is die normale menslike brein

is easily distractable,

maklik afleibaar,

obsessively social,

obsessief oor sosiale aspekte

and suffers from a deficit of attention to detail.

en skiet dit tekort by aandag aan klein besonderhede.

To be sure, autistic people have a hard time

Dis moeilik vir outistiese mense om in 'n wêreld te leef

living in a world not built for them.

wat nie vir hulle gemaak is nie.

[Seventy] years later, we're still catching up to Asperger,

[Sewentig] jaar later probeer ons steeds vir Asperger inhaal,

who believed that the "cure" for the most disabling aspects of autism

wat geglo het dat die "genesing" vir die moeilikste aspekte van outisme

is to be found in understanding teachers,

gevind kan word in onderwysers met begrip,

accommodating employers,

toegeeflike werkgewers,

supportive communities,

ondersteunende gemeenskappe

and parents who have faith in their children's potential.

en ouers wat glo in hulle kinders se potensiaal.

An autistic [man] named Zosia Zaks once said,

'n Outistiese [man], Zosia Zaks, het gesê:

"We need all hands on deck to right the ship of humanity."

"Ons het almal aan dek nodig om die skip van medemenslikheid op koers te hou."

As we sail into an uncertain future,

Soos ons 'n onseker toekoms invaar,

we need every form of human intelligence on the planet

het ons elke vorm van menslike intelligensie nodig

working together to tackle the challenges that we face as a society.

om saam te werk om die probleme op te los wat ons samelewing in die gesig staar.

We can't afford to waste a brain.

Ons kan nie bekostig om 'n brein te mors nie.

Thank you.

Dankie.

(Applause)

(Applous)