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