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. 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.
Lani po božiču je 132 otrok v Kaliforniji zbolelo za ošpicami, po tem ko so obiskali Disneyland ali bili v stiku s kom, ki je bil tam. Virus je prečkal kanadsko mejo in okužil več kot 100 otrok v Quebecu. Eno izmed tragičnih dejstev o tem izbruhu je, da so ošpice, ki so lahko smrtonosne za otroke z oslabelim imunskim sistemom, ena izmed najlažje preprečljivih bolezni na svetu. Učinkovito cepivo za ošpice poznamo že več kot pol stoletja, ampak otroci, ki so zboleli med izbruhom v Disneylandu, niso bili cepljeni, ker so se njihovi starši bali domnevno se strašnejše bolezni: avtizma.
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.
Ampak... Ali ni bil članek, ki je sprožil polemike o avtizmu in cepivih ovržen, preklican in označen za namerno prevaro v Britanski Medicinski reviji? Ali večina znanstveno osveščenih ljudi ne ve, da je teorija o cepivih, ki povzročajo avtizem bedarija? Mislim, da večina izmed vas to ve, ampak milijone staršev po svetu je še strah, da bodo zaradi cepiv njihovi otroci zboleli z avtizmom.
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.
Zakaj? Zato. Ta graf prikazuje višanje prevalence avtizma skozi čas. Skozi 20. stoletje je avtizem veljal za izredno redko bolezen. Redki psihologi in pediatri, ki so sploh slišali zanjo, so menili, da v svoji celotni karieri ne bodo videli niti enega samega primera. Desetletja je bila prevalenca ocenjena na tri ali štiri otroke na 10 000. Ampak v 90. letih prejšnjega stoletja je ta številka naglo porasla. Dobrodelne organizacije kot Autism Speaks (Avtizem Govori) o avtizmu vedno znova govorijo kot o epidemiji, kakor da se ga lahko nalezeš od drugega otroka v Disenylandu.
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?
Kaj se torej dogaja? Če niso kriva cepiva, kaj je? Če vprašate ljudi v Centru za obvladovanje bolezni (COB) v Atlanti, kaj se dogaja, se zanašajo na fraze kot: "razširjeni diagnostični kriteriji" in "učinkovitejše odkrivanje primerov" za pojasnjevanje porasta v številu avtističnih otrok. Ampak takšni odgovori ne pomirijo strahu mlade matere, ki se neuspešno trudi vzpostaviti očesni stik s svojim dveletnikom. Če smo morali razširiti diagnostične kriterije, zakaj so bili prej tako ozki? Zakaj je tako težko najti opise primerov avtizma pred 90. leti 20. stoletja?
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.
Pred petimi leti sem se odločil, da bom našel odgovore na ta vprašanja. Ugotovil sem, da to kar se je zgodilo, ni toliko povezano s počasnim in previdnim napredkom znanosti, pač pa z močjo zapeljive pripovedi. Tekom 20. stoletja so kliniki pripovedovali le eno zgodbo, o tem kaj avtizem je in kako so ga odkrili. Ampak ta zgodba se je izkazala za napačno in posledice te napake imajo poguben vpliv na svetovno javno zdravje. Obstaja še druga, bolj pravilna zgodba o avtizmu, ki je bila izgubljena in pozabljena v temnih kotičkih medicinske literature. Ta druga zgodba nam govori o tem, kako smo prisli do sem in k čemur moramo stremeti v prihodnosti.
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.
Prva zgodba se začne s pediatričnim psihiatrom v bolnisnici Johna Hopkinsa z imenom Leo Kanner. Leta 1943 je Kanner objavil članek, v katerem je opisal 11 mladih pacientov, ki so navidez živeli v lastnem svetu in ignorirali ljudi okoli sebe, celo lastne starše. Cele ure so se lahko zabavali, tako da so si z rokami mahali pred obrazi. Ampak zlahka jih je zajela panika, na primer če so prestavili njihovo najljubšo igračko, ne da bi jim povedali. Glede na paciente, ki so prihajali v njegovo kliniko, je Kanner predvideval, da je avtizem zelo redek. V 50. letih je kot vodilni svetovni strokovnjak na tem področju, naznanil, da je videl manj kot 150 primerov pravega avtizma, čeprav so k njemu pošiljali otroke od vsepovsod, celo iz Južnoafriške Republike. To pravzaprav ni presenetljivo, saj so bili Kannerjevi diagnosticni kriteriji za avtizem izredno selektivni. Otrokom, ki so imeli epileptične napade, je nerad postavil diagnozo avtizma, čeprav danes vemo, da je epilepsija zelo pogosta pri avtističnih pacientih. Nekoč se je pohvalil, da je 9 izmed 10 otrok, ki so jih k njemu napotili drugi zdravniki, odpravil brez da bi jim diagnosticiral avtizem.
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.
Kanner je bil pameten moški, a veliko njegovih teorij je bilo napačnih. Avtizem je klasificiral kot obliko otroške psihoze, ki naj bi jo povzročili hladni in neljubeči starši. Rekel je, da so te otroke vzgajali v "hladilniku, ki ga niso nikoli odtalili." Istočasno pa je Kanner opazil, da imajo nekateri njegovi mlajši pacienti, posebne sposobnosti na določenih podrocjih kot so glasba, matematika in spomin. En deček v njegovi kliniki je razločil med 18 različnimi simfonijami, preden je dopolnil dve leti. Ko je mama zavrtela njegovo priljubljeno ploščo, je pravilno oznanil: "Beethoven!" A Kanner teh sposobnosti ni odobraval in je trdil, da otroci le ponavljajo reči, ki so jih slišali od svojih domišljavih staršev, saj si želijo njihovega odobravanja. Posledično je avtizem postal vir sramote in stigme za družine in dve generaciji avtističnih otrok, ki so jih poslali v institucije "v njihovo lastno dobro," sta postali nevidni za svet.
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. To make the case to the National Health Service that more resources were needed for autistic children and their families,
Presenetljivo, so šele v 70. letih 20. stoletja raziskovalci pričeli preverjati Kannerjevo teorijo, da je avtizem redek. Lorna Wing je bila kognitivna psihologinja v Londonu in je menila, da je Kannerjeva teorija o "hladni vzgoji" izredno neumna. Z možem Johnom sta bila topla, ljubeča človeka in sta kljub temu imela hudo avtistično hčer Susie. Lorna in John sta vedela, kako težko je vzgajati otroka kot je Susie brez podpornih služb, posebne izobrazbe in ostalih sredstev, do katerih nimaš dostopa brez postavljene diagnoze. Da bi lahko Nacionalno zdravstveno sluzbo zaprosili za več sredstev za avtistične otroke in njihove družine,
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.
sta se Lorna in njena sodelavka Judith Gould odločili, da bosta storili nekaj, kar bi moralo biti narejeno pred 30 leti. Izvedli sta študijo o pogostosti avtizma v splošni populaciji. Preučevali sta Londonsko predmestje Camberwell in iskali avtistične otroke v skupnosti. Njune ugotovitve, so jasno pokazale, da je Kannerjev model preozek, saj je avtizem v resnici zelo pester in raznolik. Nekateri otroci sploh niso mogli govoriti, medtem ko so drugi neprestano govorili o svoji prevzetosti z astrofiziko, dinozavri ali genealogijo kraljevih družin. Ali drugače povedano, teh otrok se ni dalo enostavno popredalčkati, kot se je izrazila Judith. In videli sta mnogo teh otrok, veliko več kot je predvideval Kannerjev monolitični model.
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.
Sprva so ju njune najdbe zelo zmedle. Kako da teh otrok ni nihče opazili že prej? Potem pa je Lorna odkrila članek, ki je bil obavljen v Nemčiji leta 1944, le leto po objavi Kannerjevega članka, in bil nato pozabljen, pokopan v pepelu grozovitih časov, ki se jih nihče ni želel spominjati ali misliti nanje. Kanner je poznal članek svojega tekmeca, ampak ga namerno ni omenjal v svojih lastnih publikacijah. Članka niso nikoli niti prevedli v angleščino, ampak na srečo je Lornin mož govoril nemško in ga je prevedel zanjo.
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.
Članek je vseboval alternativno zgodbo o avtizmu. Avtor je bil Hans Asperger, ki je vodil kombinirano kliniko in internatsko šolo na Dunaju v 30. letih 20. stoletja. Aspergerjeve ideje o poučevanju otrok s posebnimi potrebami so bile progresivne celo po današnjih standardih. Jutra so se v njegovi kliniki začenjala s telovadbo ob glasbi, ob nedeljskih popoldnevih pa so otroci uprizarjali gledališke predstave. Namesto, da bi za razvoj avtizma obtoževal starše, ga je Asperger označil za doživljenjsko poligensko obolenje, ki zahteva sočutno podporo in prilagajanje tekom celotnega življenja. Otrok v svoji kliniki ni obravnaval kot paciente, pač pa jih je klical "moji mali profesorji" in z njihovo pomočjo razvijal nove metode poučevanja, ki so bile prilagojene zanje. Ključno je, da je Asperger avtizem videl kot raznolik spekter, ki vključuje izredno velik razpon nadarjenosti in nezmožnosti. Verjel je, da so avtizem in avtistične značilnosti pogoste in so tudi vedno bile, saj je te značilnosti prepoznal v znanih arhetipih iz pop kulture, npr. arhetip družabno nespretnega znanstvenika in zmedenega profesorja. Šel je celo tako daleč, da je trdil, da je za uspeh v znanosti in umetnosti potreben kanček avtizma.
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.
Lorna in Judith sta spoznali, da se je Kanner motil tako o pogostosti avtizma, kakor tudi o njegovem vzroku. V naslednjih letih sta na skrivaj sodelovali z Ameriško psihiatrično asociacijo, da bi razširili kriterije za diagnozo, tako da bi odražali raznovrstnost tega, čemur danes pravimo "avtistični spekter." V poznih 80. in zgodnjih 90. 20. stoletja so njune spremembe postale veljavne in so zamenjale Kannerjev ozek model, z Aspergerjevim širokim in vključujočim.
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.
A te spremembe se niso dogajale v vakumu. Po naključju so takrat, ko sta Lorna in Judith v zakulisju izboljševali kriterije, ljudje po celem svetu prvič videli avtistično odraslo osebo. Pred izidom filma Deževni mož leta 1988, je samo majhen krog strokovnjakov vedel, kako avtizem izgleda. Po nepozabnem nastopu Dustina Hoffmana v vlogi Raymonda Babbitta, ki je filmu prislužil štiri Oskarje, so pediatri, psihologi, učitelji in starši po vsem svetu vedeli kako izgleda avtizem.
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.
Po naključju so istočasno uvedli tudi prve preproste klinične teste za diagnostiko avtizma. Ni bilo več potrebno biti povezan z majhnim krogom strokovnjakov za avtizem, da bi bil tvoj otrok pregledan.
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.
Kombinacija Deževnega moža, spremenjenih kriterijev in uvedbe novih testov je povzročila efekt snežne krogle in velik porast ozaveščenosti o avtizmu. Število diagnoz je sunkovito poraslo, kakor sta Lorna in Judith predvideli in upali, in omogočilo avtistom in njihovim družinam dostop do sredstev in podpore, ki so jo zaslužili.
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.
Nato pa se je pojavil Andrew Wakefield in za porast v številu diagnoz okrivil cepiva. Njegova zgodba je preprosta, vplivna in zapeljivo prepričljiva, vendar zmotna, tako kot Kannerjeva teorija, da je avtizem redek.
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.
Če je COB-jeva ocena, da ima eden na 68 ameriških otrok motnjo avtističnega spektra, pravilna, potem so avtistični ljudje ena izmed največjih svetovnih manjšin. V zadnjih letih so se avtistični ljudje povezali preko interneta, da bi oporekali predstavi, da so uganke, ki jih moramo rešiti z novim medicinskim prebojem. Skovali so pojem "nevro-raznolikost," da bi proslavili pestrost človeške kognicije.
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.
Nevro-raznolikost si lahko predstavljamo kot človeške operacijske sisteme. Če naš računalnik ne uporablja OS Windows, še ne pomeni, da je pokvarjen. Z avtističnega stališča so normalni človeški možgani zlahka odvrnljivi, pretirano socialno usmerjeni in premalo pozorni na podrobnosti. Seveda je avtističnim ljudem težko živeti na svetu, ki ni prilagojen zanje. Sedemdeset let po njegovem članku, še vedno nismo na isti ravni kot Asperger, ki je verjel, da so "zdravilo" za še tako onesposabljajoče vidike avtizma razumevajoči učitelji, prilagodljivi delodajalci, podpirajoče skupnosti in starši, ki verjamejo v otrokov potencial.
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.
Avtistična ženska Zosia Zaks, je nekoč rekla: "Vsi moramo sodelovati pri obračanju ladje človeštva v pravo smer." Ko plovemo v neznano prihodnost, morajo vse oblike inteligence na tem planetu sodelovati pri spoprijemanju z izzivi, s katerimi se sooča naša družba. Vsi možgani so za nas nepogrešljivi.
Thank you.
Hvala
(Applause)
(Aplavz)