kreise an wand malen
just after christmas last year, 132 kids in california got the measles by either visiting disneyland or being exposed to someonewho'd been there. the virus then hopped the canadian border, infecting more than100 children in quebec. one of the tragic thingsabout this outbreak is that measles, which can be fatalto a child with a weakened immune system, is one of the most easilypreventable diseases in the world.
an effective vaccine against it has been available for morethan half a century, but many of the kids involvedin the disneyland outbreak had not been vaccinated because their parents were afraid of something allegedly even worse: autism. but wait -- wasn't the paperthat 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 theorythat vaccines cause autism is b.s.? i think most of you do, but millions of parents worldwide continue to fear that vaccinesput their kids at risk for autism. why?
here's why. this is a graph of autismprevalence estimates rising over time. for most of the 20th century, autism was consideredan incredibly rare condition. the few psychologists and pediatricianswho'd even heard of it figured they would get throughtheir entire careers without seeing a single case. for decades, the prevalence estimatesremained stable at just three or four children in 10,000.
but then, in the 1990s, the numbers started to skyrocket. fundraising organizationslike autism speaks routinely refer to autism as an epidemic, as if you could catch itfrom another kid at disneyland. so what's going on? if it isn't vaccines, what is it? if you ask the folks down atthe 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 allaythe fears of a young mother who is searching hertwo-year-old's face for eye contact. if the diagnostic criteriahad to be broadened, why were they so narrowin the first place? why were cases of autismso hard to find
before the 1990s? five years ago, i decided to tryto uncover the answers to these questions. i learned that what happened has less to do with the slow and cautiousprogress of science than it does with the seductivepower of storytelling. clinicians told one story about what autism isand how it was discovered, but that story turned out to be wrong, and the consequences of it
are having a devastating impacton global public health. there was a second,more accurate story of autism which had been lost and forgotten in obscure cornersof the clinical literature. this second story tells us everythingabout how we got here and where we need to go next. the first story starts with a childpsychiatrist at johns hopkins hospital named leo kanner. in 1943, kanner published a paper
describing 11 young patientswho seemed to inhabit private worlds, ignoring the people around them, even their own parents. they could amuse themselves for hours by flapping their handsin front of their faces, but they were panicked by little things like their favorite toybeing moved from its usual place without their knowledge. based on the patientswho were brought to his clinic,
kanner speculatedthat autism is very rare. by the 1950s, as the world'sleading authority on the subject, he declared that he had seenless than 150 true cases of his syndrome while fielding referrals fromas far away as south africa. that's actually not surprising, because kanner's criteriafor diagnosing autism were incredibly selective. for example, he discouraged givingthe diagnosis to children who had seizures but now we know that epilepsyis very common in autism.
he once bragged that he had turnednine out of 10 kids referred to his office as autisticby other clinicians without giving them an autism diagnosis. kanner was a smart guy, but a number of his theoriesdidn't pan out. he classified autism as a formof infantile psychosis caused by cold and unaffectionate parents. these children, he said, had been kept neatlyin a refrigerator that didn't defrost.
at the same time, however, kanner noticed that someof his young patients had special abilitiesthat clustered in certain areas like music, math and memory. one boy in his clinic could distinguish between 18 symphoniesbefore he turned two. when his mother put onone of his favorite records, he would correctly declare,"beethoven!" but kanner took a dim viewof these abilities,
claiming that the kidswere just regurgitating things they'd heard their pompous parents say, desperate to earn their approval. as a result, autism becamea source of shame and stigma for families, and two generations of autistic children were shipped off to institutionsfor their own good, becoming invisible to the world at large. amazingly, it wasn't until the 1970s that researchers began to testkanner's theory that autism was rare.
lorna wing was a cognitivepsychologist in london who thought that kanner's theoryof refrigerator parenting were "bloody stupid," as she told me. she and her husband john were warmand affectionate people, and they had a profoundlyautistic daughter named susie. lorna and john knew how hard it wasto raise a child like susie without support services, special education, and the other resources that areout of reach without a diagnosis.
to make the caseto the national health service that more resources were neededfor autistic children and their families, lorna and her colleague judith gould decided to do something that shouldhave been done 30 years earlier. they undertook a study of autismprevalence in the general population. they pounded the pavementin a london suburb called camberwell to try to find autistic childrenin the community. what they saw made clearthat kanner's model was way too narrow, while the reality of autismwas much more colorful and diverse.
some kids couldn't talk at all, while others waxed on at lengthabout their fascination with astrophysics, dinosaurs or the genealogy of royalty. in other words, these childrendidn't fit into nice, neat boxes, as judith put it, and they saw lots of them, way more than kanner's monolithic modelwould have predicted. at first, they were at a lossto make sense of their data. how had no one noticedthese children before?
but then lorna came upon a referenceto 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 rememberor think about. kanner knew about this competing paper, but scrupulously avoidedmentioning it in his own work. it had never evenbeen translated into english,
but luckily, lorna's husband spoke german, and he translated it for her. the paper offeredan alternate story of autism. its author was a man named hans asperger, who ran a combination clinicand residential school in vienna in the 1930s. asperger's ideas about teaching childrenwith learning differences were progressive evenby contemporary standards. mornings at his clinic beganwith exercise classes set to music,
and the children put on playson sunday afternoons. instead of blaming parentsfor causing autism, asperger framed it as a lifelong,polygenetic disability that requires compassionate formsof support and accommodations over the course of one's whole life. rather than treating the kidsin his clinic like patients, asperger called themhis little professors, and enlisted their help in developingmethods of education that were particularly suited to them.
crucially, asperger viewed autismas a diverse continuum that spans an astonishing rangeof giftedness and disability. he believed that autismand autistic traits are common and always have been, seeing aspects of this continuumin 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 successin science and art,
a dash of autism is essential. lorna and judith realized that kannerhad been as wrong about autism being rare as he had been about parents causing it. over the next several years, they quietly worked withthe american psychiatric association to broaden the criteria for diagnosis to reflect the diversity of whatthey 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. these changes weren'thappening in a vacuum. by coincidence, as lorna and judithworked behind the scenes to reform the criteria, people all over the world were seeingan autistic adult for the first time. before "rain man" came out in 1988, only a tiny, ingrown circle of expertsknew what autism looked like, but after dustin hoffman's unforgettableperformance as raymond babbitt
earned "rain man" four academy awards, pediatricians, psychologists, teachers and parents all over the worldknew what autism looked like. coincidentally, at the same time, the first easy-to-use clinical testsfor diagnosing autism were introduced. you no longer had to have a connectionto that tiny circle of experts to get your child evaluated. 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 peopleand their families to finally get the supportand services they deserved. then andrew wakefield came along to blame the spikein diagnoses on vaccines, a simple, powerful,
and seductively believable story that was as wrong as kanner's theory that autism was rare. if the cdc's current estimate, that one in 68 kids in americaare on the spectrum, is correct, autistics are one of the largestminority groups in the world. in recent years, autistic peoplehave come together on the internet to reject the notion that theyare puzzles to be solved by the next medical breakthrough,
coining the term "neurodiversity" to celebrate the varietiesof human cognition. one way to understand neurodiversity is to think in termsof human operating systems. just because a p.c. is not running windowsdoesn't mean that it's broken. by autistic standards,the normal human brain is easily distractable, obsessively social, and suffers from a deficitof attention to detail.
to be sure, autistic peoplehave a hard time living in a world not built for them. [seventy] years later, we're stillcatching 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 faithin their children's potential. an autistic [man]named zosia zaks once said,
"we need all hands on deckto right the ship of humanity." as we sail into an uncertain future, we need every formof human intelligence on the planet working together to tacklethe challenges that we face as a society. we can't afford to waste a brain. thank you. (applause)