1 99:59:59,999 --> 99:59:59,999 Just after Christmas last year, 2 99:59:59,999 --> 99:59:59,999 132 kids in California got the measles 3 99:59:59,999 --> 99:59:59,999 by either visiting Disneyland 4 99:59:59,999 --> 99:59:59,999 or being exposed to someone who'd been there. 5 99:59:59,999 --> 99:59:59,999 The virus then hopped the Canadian border, 6 99:59:59,999 --> 99:59:59,999 infecting more than a hundred children in Quebec. 7 99:59:59,999 --> 99:59:59,999 One of the tragic things about this outbreak 8 99:59:59,999 --> 99:59:59,999 is that measles, which can be fatal to a child with a weakened immune system, 9 99:59:59,999 --> 99:59:59,999 is one of the most easily preventable diseases in the world. 10 99:59:59,999 --> 99:59:59,999 An effective vaccine against it 11 99:59:59,999 --> 99:59:59,999 has been available for more than half a century, 12 99:59:59,999 --> 99:59:59,999 but many of the kids involved in the Disneyland outbreak 13 99:59:59,999 --> 99:59:59,999 had not been vaccinated 14 99:59:59,999 --> 99:59:59,999 because their parents were afraid 15 99:59:59,999 --> 99:59:59,999 of something allegedly even worse: 16 99:59:59,999 --> 99:59:59,999 autism. 17 99:59:59,999 --> 99:59:59,999 But wait: wasn't the paper that sparked the controversy 18 99:59:59,999 --> 99:59:59,999 about autism and vaccines 19 99:59:59,999 --> 99:59:59,999 debunked, retracted, 20 99:59:59,999 --> 99:59:59,999 and branded a deliberate fraud 21 99:59:59,999 --> 99:59:59,999 by the British Medical Journal? 22 99:59:59,999 --> 99:59:59,999 Don't most science-savvy people 23 99:59:59,999 --> 99:59:59,999 know that the theory that vaccines cause autism is B.S.? 24 99:59:59,999 --> 99:59:59,999 I think most of you do, 25 99:59:59,999 --> 99:59:59,999 but millions of parents worldwide 26 99:59:59,999 --> 99:59:59,999 continue to fear that vaccines put their kids at risk for autism. 27 99:59:59,999 --> 99:59:59,999 Why? 28 99:59:59,999 --> 99:59:59,999 Here's why. 29 99:59:59,999 --> 99:59:59,999 This is a graph of autism prevalence estimates rising over time. 30 99:59:59,999 --> 99:59:59,999 For most of the 20th century, 31 99:59:59,999 --> 99:59:59,999 autism was considered an incredibly rare condition. 32 99:59:59,999 --> 99:59:59,999 The few psychologists and pediatricians who'd even heard of it 33 99:59:59,999 --> 99:59:59,999 figured they would get through their entire careers 34 99:59:59,999 --> 99:59:59,999 without seeing a single case. 35 99:59:59,999 --> 99:59:59,999 For decades, the prevalence estimates remained stable 36 99:59:59,999 --> 99:59:59,999 at just three or four children in ten thousand. 37 99:59:59,999 --> 99:59:59,999 But then, in the 1990s, 38 99:59:59,999 --> 99:59:59,999 the numbers started to skyrocket. 39 99:59:59,999 --> 99:59:59,999 Fundraising organizations like Autism Speaks 40 99:59:59,999 --> 99:59:59,999 routinely refer to autism as an epidemic, 41 99:59:59,999 --> 99:59:59,999 as if you could catch it from another kid at Disneyland. 42 99:59:59,999 --> 99:59:59,999 So what's going on? 43 99:59:59,999 --> 99:59:59,999 If it isn't vaccines, what is it? 44 99:59:59,999 --> 99:59:59,999 If you ask the folks down at the Centers for Disease Control in Atlanta 45 99:59:59,999 --> 99:59:59,999 what's going on, 46 99:59:59,999 --> 99:59:59,999 they tend to rely on phrases like "broadened diagnostic criteria" 47 99:59:59,999 --> 99:59:59,999 and "better case finding" 48 99:59:59,999 --> 99:59:59,999 to explain these rising numbers. 49 99:59:59,999 --> 99:59:59,999 But that kind of language 50 99:59:59,999 --> 99:59:59,999 doesn't do much to allay the fears of a young mother 51 99:59:59,999 --> 99:59:59,999 who is searching her two-year old's face for eye contact. 52 99:59:59,999 --> 99:59:59,999 If the diagnostic criteria had to be broadened, 53 99:59:59,999 --> 99:59:59,999 why were they so narrow in the first place? 54 99:59:59,999 --> 99:59:59,999 Why were cases of autism so hard to find 55 99:59:59,999 --> 99:59:59,999 befor the 1990s? 56 99:59:59,999 --> 99:59:59,999 Five years ago, I decided to try to uncover the answers to these questions. 57 99:59:59,999 --> 99:59:59,999 I learned that what happened 58 99:59:59,999 --> 99:59:59,999 has less to do with the slow and cautious progress of science 59 99:59:59,999 --> 99:59:59,999 than it does with the seductive power of storytelling. 60 99:59:59,999 --> 99:59:59,999 For most of the 20th century, 61 99:59:59,999 --> 99:59:59,999 clinicians told one story 62 99:59:59,999 --> 99:59:59,999 about what autism is and how it was discovered, 63 99:59:59,999 --> 99:59:59,999 but that story turned out to be wrong, 64 99:59:59,999 --> 99:59:59,999 and the consequences of it 65 99:59:59,999 --> 99:59:59,999 are having a devastating impact on global public health. 66 99:59:59,999 --> 99:59:59,999 There was a second, more accurate story of autism 67 99:59:59,999 --> 99:59:59,999 which had been lost and forgotten 68 99:59:59,999 --> 99:59:59,999 in obscure corners of the clinical literature. 69 99:59:59,999 --> 99:59:59,999 This second story tells us everything about how we got here 70 99:59:59,999 --> 99:59:59,999 and where we need to go next. 71 99:59:59,999 --> 99:59:59,999 The first story starts with a child psychiatrist at Johns Hopkins Hospital 72 99:59:59,999 --> 99:59:59,999 named Leo Kanner. 73 99:59:59,999 --> 99:59:59,999 In 1943, Kanner published a paper 74 99:59:59,999 --> 99:59:59,999 describing 11 young patients who seemed to inhabit private worlds, 75 99:59:59,999 --> 99:59:59,999 ignoring the people around them, 76 99:59:59,999 --> 99:59:59,999 even their own parents. 77 99:59:59,999 --> 99:59:59,999 They could amuse themselves for hours 78 99:59:59,999 --> 99:59:59,999 by flapping their hands in front of their faces, 79 99:59:59,999 --> 99:59:59,999 but they were panicked by little things 80 99:59:59,999 --> 99:59:59,999 like their favorite toy being moved from its usual place 81 99:59:59,999 --> 99:59:59,999 without their knowledge. 82 99:59:59,999 --> 99:59:59,999 Based on the patients who were brought to his clinic, 83 99:59:59,999 --> 99:59:59,999 Kanner speculated that autism is very rare. 84 99:59:59,999 --> 99:59:59,999 By the 1950s, as the world's leading authority on the subject, 85 99:59:59,999 --> 99:59:59,999 he declared that he had seen less than 150 true cases of his syndrome 86 99:59:59,999 --> 99:59:59,999 while fielding referrals from as far away as South Africa. 87 99:59:59,999 --> 99:59:59,999 That's actually not surprising, 88 99:59:59,999 --> 99:59:59,999 because Kanner's criteria for diagnosing autism 89 99:59:59,999 --> 99:59:59,999 were incredibly selective. 90 99:59:59,999 --> 99:59:59,999 For example, he discouraged giving the diagnosis to children who had seizures 91 99:59:59,999 --> 99:59:59,999 but now we know that epilepsy is very common in autism. 92 99:59:59,999 --> 99:59:59,999 He once bragged that he had turned nine out of 10 kids 93 99:59:59,999 --> 99:59:59,999 referred to his office as autistic by other clinicians 94 99:59:59,999 --> 99:59:59,999 without giving them an autism diagnosis. 95 99:59:59,999 --> 99:59:59,999 Kanner was a smart guy, 96 99:59:59,999 --> 99:59:59,999 but a number of his theories didn't pan out. 97 99:59:59,999 --> 99:59:59,999 He classified autism as a form of infantile psychosis 98 99:59:59,999 --> 99:59:59,999 caused by cold and unaffectionate parents. 99 99:59:59,999 --> 99:59:59,999 These children, he said, 100 99:59:59,999 --> 99:59:59,999 had been kept neatly in a refrigerator that didn't defrost. 101 99:59:59,999 --> 99:59:59,999 At the same time, however, 102 99:59:59,999 --> 99:59:59,999 Kanner noticed that some of his young patients 103 99:59:59,999 --> 99:59:59,999 had special abilities that clustered in certain areas 104 99:59:59,999 --> 99:59:59,999 like music, math, and memory. 105 99:59:59,999 --> 99:59:59,999 One boy in his clinic 106 99:59:59,999 --> 99:59:59,999 could distinguish between 18 symphonies 107 99:59:59,999 --> 99:59:59,999 before he turned two. 108 99:59:59,999 --> 99:59:59,999 When his mother put on one of his favorite records, 109 99:59:59,999 --> 99:59:59,999 he would correctly declare, "Beethoven!" 110 99:59:59,999 --> 99:59:59,999 But Kanner took a dim view of these abilities, 111 99:59:59,999 --> 99:59:59,999 claiming that the kids were just regurgitating things 112 99:59:59,999 --> 99:59:59,999 they'd heard their pompous parents say, 113 99:59:59,999 --> 99:59:59,999 desperate to earn their approval. 114 99:59:59,999 --> 99:59:59,999 As a result, autism became a source of shame and stigma for families, 115 99:59:59,999 --> 99:59:59,999 and two generations of autistic children 116 99:59:59,999 --> 99:59:59,999 were shipped off to institutions for their own good, 117 99:59:59,999 --> 99:59:59,999 becoming invisible to the world at large. 118 99:59:59,999 --> 99:59:59,999 Amazingly, it wasn't until the 1970s 119 99:59:59,999 --> 99:59:59,999 that researchers began to test Kanner's theory that autism was rare. 120 99:59:59,999 --> 99:59:59,999 Lorna Wing was a cognitive psychologist in London 121 99:59:59,999 --> 99:59:59,999 who thought that Kanner's theory of refrigerator parenting 122 99:59:59,999 --> 99:59:59,999 were "bloody stupid," as she told me. 123 99:59:59,999 --> 99:59:59,999 She and her husband John were warm and affectionate people, 124 99:59:59,999 --> 99:59:59,999 and they had a profoundly autistic daughter named Susie. 125 99:59:59,999 --> 99:59:59,999 Lorna and John knew how hard it was 126 99:59:59,999 --> 99:59:59,999 to raise a child like Susie 127 99:59:59,999 --> 99:59:59,999 without support services, 128 99:59:59,999 --> 99:59:59,999 special education, 129 99:59:59,999 --> 99:59:59,999 and the other resources that are out of reach without a diagnosis. 130 99:59:59,999 --> 99:59:59,999 To make the case to the National Health Service 131 99:59:59,999 --> 99:59:59,999 that more resources were needed 132 99:59:59,999 --> 99:59:59,999 for autistic children and their families, 133 99:59:59,999 --> 99:59:59,999 Lorna and her colleague Judith Gould 134 99:59:59,999 --> 99:59:59,999 decided to do something that should have been done 30 years earlier. 135 99:59:59,999 --> 99:59:59,999 They undertook a study of autism prevalence in the general population. 136 99:59:59,999 --> 99:59:59,999 They pounded the pavement in a London suburb called Camberwell 137 99:59:59,999 --> 99:59:59,999 to try to find autistic children in the community. 138 99:59:59,999 --> 99:59:59,999 What they saw made clear 139 99:59:59,999 --> 99:59:59,999 that Kanner's model was way too narrow, 140 99:59:59,999 --> 99:59:59,999 while the reality of autism 141 99:59:59,999 --> 99:59:59,999 was much more colorful and diverse. 142 99:59:59,999 --> 99:59:59,999 Some kids couldn't talk at all, 143 99:59:59,999 --> 99:59:59,999 while others waxed on at length 144 99:59:59,999 --> 99:59:59,999 about their fascination with astrophysics, 145 99:59:59,999 --> 99:59:59,999 dinosaurs, or the genealogy of royalty. 146 99:59:59,999 --> 99:59:59,999 In other words, these children didn't fit into nice, neat boxes, 147 99:59:59,999 --> 99:59:59,999 as Judith put it, 148 99:59:59,999 --> 99:59:59,999 and they saw lots of them, 149 99:59:59,999 --> 99:59:59,999 way more than Kanner's monolithic model would have predicted. 150 99:59:59,999 --> 99:59:59,999 At first, they were at loss to make sense of their data. 151 99:59:59,999 --> 99:59:59,999 How had no one noticed these children before? 152 99:59:59,999 --> 99:59:59,999 But then Lorna came upon a reference to a paper that had been published 153 99:59:59,999 --> 99:59:59,999 in German in 1944, 154 99:59:59,999 --> 99:59:59,999 the year after Kanner's paper, 155 99:59:59,999 --> 99:59:59,999 and then forgotten, 156 99:59:59,999 --> 99:59:59,999 buried with the ashes of a terrible time 157 99:59:59,999 --> 99:59:59,999 that no one wanted to remember or think about. 158 99:59:59,999 --> 99:59:59,999 Kanner knew about this competing paper, 159 99:59:59,999 --> 99:59:59,999 but scrupulously avoided mentioning it in his own work. 160 99:59:59,999 --> 99:59:59,999 It had never even been translated into English, 161 99:59:59,999 --> 99:59:59,999 but luckily, Lorna's husband spoke German, 162 99:59:59,999 --> 99:59:59,999 and he translated it for her. 163 99:59:59,999 --> 99:59:59,999 The paper offered an alternate story of autism. 164 99:59:59,999 --> 99:59:59,999 Its author was a man named Hans Asperger, 165 99:59:59,999 --> 99:59:59,999 who ran a combination clinic and residential school 166 99:59:59,999 --> 99:59:59,999 in Vienna in the 1930s. 167 99:59:59,999 --> 99:59:59,999 Asperger's ideas about teaching children with learning differences 168 99:59:59,999 --> 99:59:59,999 were progressive even by contemporary standards. 169 99:59:59,999 --> 99:59:59,999 Mornings at his clinic began with exercise classes set to music, 170 99:59:59,999 --> 99:59:59,999 and the children put on plays on Sunday afternoons. 171 99:59:59,999 --> 99:59:59,999 Instead of blaming parents for causing autism, 172 99:59:59,999 --> 99:59:59,999 Asperger framed it as a lifelong, polygenetic disability 173 99:59:59,999 --> 99:59:59,999 that requires compassionate forms of support and accommodations 174 99:59:59,999 --> 99:59:59,999 over the course of one's whole life. 175 99:59:59,999 --> 99:59:59,999 Rather than treating the kids in his clinic like patients, 176 99:59:59,999 --> 99:59:59,999 Asperger called him his little professors, 177 99:59:59,999 --> 99:59:59,999 and enlisted their help in developing methods of education 178 99:59:59,999 --> 99:59:59,999 that were particularly suited to them. 179 99:59:59,999 --> 99:59:59,999 Crucially, Asperger viewed autism as a diverse continuum 180 99:59:59,999 --> 99:59:59,999 that spans an astonishing range 181 99:59:59,999 --> 99:59:59,999 of giftedness and disability. 182 99:59:59,999 --> 99:59:59,999 He believed that autism and autistic traits are common 183 99:59:59,999 --> 99:59:59,999 and always have been, 184 99:59:59,999 --> 99:59:59,999 seeing aspects of this continuum in familiar archetypes from pop culture 185 99:59:59,999 --> 99:59:59,999 like the socially awkward scientist 186 99:59:59,999 --> 99:59:59,999 and the absent-minded professor. 187 99:59:59,999 --> 99:59:59,999 He went so far as to say, 188 99:59:59,999 --> 99:59:59,999 it seems that for success in science and art, 189 99:59:59,999 --> 99:59:59,999 a dash of autism is essential. 190 99:59:59,999 --> 99:59:59,999 Lorna and Judith realized that Kanner had been as wrong about autism being rare 191 99:59:59,999 --> 99:59:59,999 as he had been about parents causing it. 192 99:59:59,999 --> 99:59:59,999 Over the next several years, 193 99:59:59,999 --> 99:59:59,999 they quietly worked with the American Psychiatric Association 194 99:59:59,999 --> 99:59:59,999 to broaden the criteria for diagnosis 195 99:59:59,999 --> 99:59:59,999 to reflect the diversity of what they called "the autism spectrum." 196 99:59:59,999 --> 99:59:59,999 In the late '80s and early 1990s, 197 99:59:59,999 --> 99:59:59,999 their changes went into effect, 198 99:59:59,999 --> 99:59:59,999 swapping out Kanner's narrow model 199 99:59:59,999 --> 99:59:59,999 for Asperger's broad and inclusive one. 200 99:59:59,999 --> 99:59:59,999 These changes weren't happening in a vacuum. 201 99:59:59,999 --> 99:59:59,999 By coincidence, as Lorna and Judith worked behind the scenes 202 99:59:59,999 --> 99:59:59,999 to reform the criteria, 203 99:59:59,999 --> 99:59:59,999 people all over the world were seeing an autistic adult for the first time. 204 99:59:59,999 --> 99:59:59,999 Before "Rain Man" came out in 1988, 205 99:59:59,999 --> 99:59:59,999 only a tiny, ingrown circle of experts knew what autism looked like, 206 99:59:59,999 --> 99:59:59,999 but after Dustin Hoffman's unforgettable performance as Raymond Babbitt 207 99:59:59,999 --> 99:59:59,999 earned "Rain Man" four Academy Awards, 208 99:59:59,999 --> 99:59:59,999 pediatricians, psychologists, 209 99:59:59,999 --> 99:59:59,999 teachers, and parents all over the world knew what autism looked like. 210 99:59:59,999 --> 99:59:59,999 Coincidentally, at the same time, 211 99:59:59,999 --> 99:59:59,999 the first easy-to-use clinical tests 212 99:59:59,999 --> 99:59:59,999 for diagnosing autism were introduced. 213 99:59:59,999 --> 99:59:59,999 You no longer had to have a connection to that tiny circle of experts 214 99:59:59,999 --> 99:59:59,999 to get your child evaluated. 215 99:59:59,999 --> 99:59:59,999 The combination of "Rain Man," 216 99:59:59,999 --> 99:59:59,999 the changes to the criteria, and the introduction of these tests 217 99:59:59,999 --> 99:59:59,999 created a network effect, 218 99:59:59,999 --> 99:59:59,999 a perfect storm of autism awareness. 219 99:59:59,999 --> 99:59:59,999 The number of diagnoses started to soar, 220 99:59:59,999 --> 99:59:59,999 just as Lorna and Judith predicted, 221 99:59:59,999 --> 99:59:59,999 indeed hoped, that it would, 222 99:59:59,999 --> 99:59:59,999 enabling autistic people and their families 223 99:59:59,999 --> 99:59:59,999 to finally get the support and services they deserved. 224 99:59:59,999 --> 99:59:59,999 Then Andrew Wakefield came along 225 99:59:59,999 --> 99:59:59,999 to blame the spike in diagnoses on vaccines, 226 99:59:59,999 --> 99:59:59,999 a simple, powerful, 227 99:59:59,999 --> 99:59:59,999 and seductively believable story 228 99:59:59,999 --> 99:59:59,999 that was as wrong as Kanner's theory 229 99:59:59,999 --> 99:59:59,999 that autism was rare. 230 99:59:59,999 --> 99:59:59,999 If the CDC's current estimate, 231 99:59:59,999 --> 99:59:59,999 that one in 68 kids in America are on the spectrum, is correct, 232 99:59:59,999 --> 99:59:59,999 autistics are one of the largest minority groups in the world. 233 99:59:59,999 --> 99:59:59,999 In recent years, autistic people have come together on the Internet 234 99:59:59,999 --> 99:59:59,999 to reject the notion that they are puzzles to be solved 235 99:59:59,999 --> 99:59:59,999 by the next medical breakthrough, 236 99:59:59,999 --> 99:59:59,999 coining the term "neurodiversity" 237 99:59:59,999 --> 99:59:59,999 to celebrate the varieties of human cognition. 238 99:59:59,999 --> 99:59:59,999 One way to understand neurodiversity 239 99:59:59,999 --> 99:59:59,999 is to think in terms of human operating systems. 240 99:59:59,999 --> 99:59:59,999 Just because a PC is not running Windows 241 99:59:59,999 --> 99:59:59,999 doesn't mean that it's broken. 242 99:59:59,999 --> 99:59:59,999 By autistic standards, the normal human brain 243 99:59:59,999 --> 99:59:59,999 is easily distractable, 244 99:59:59,999 --> 99:59:59,999 obsessively social, 245 99:59:59,999 --> 99:59:59,999 and suffers from a deficit of attention to detail. 246 99:59:59,999 --> 99:59:59,999 To be sure, autistic people have a hard time 247 99:59:59,999 --> 99:59:59,999 living in a world not built for them. 248 99:59:59,999 --> 99:59:59,999 Eighty years later, we're still catching up to Asperger, 249 99:59:59,999 --> 99:59:59,999 who believed that the cure for the most disabling aspects of autism 250 99:59:59,999 --> 99:59:59,999 is to be found in understanding teachers, 251 99:59:59,999 --> 99:59:59,999 accommodating employers, 252 99:59:59,999 --> 99:59:59,999 supportive communities, 253 99:59:59,999 --> 99:59:59,999 and parents who have faith in their children's potential. 254 99:59:59,999 --> 99:59:59,999 An autistic woman named Xoxia Zax once said, 255 99:59:59,999 --> 99:59:59,999 "We need all hands on deck 256 99:59:59,999 --> 99:59:59,999 to right the ship of humanity. 257 99:59:59,999 --> 99:59:59,999 As we sail into an uncertain future, 258 99:59:59,999 --> 99:59:59,999 we need every form of human intelligence on the planet 259 99:59:59,999 --> 99:59:59,999 working together to tackle the challenges that we face as a society. 260 99:59:59,999 --> 99:59:59,999 We can't afford to waste a brain." 261 99:59:59,999 --> 99:59:59,999 Thank you. 262 99:59:59,999 --> 99:59:59,999 (Applause)