tv Edith Sheffer Aspergers Children CSPAN May 27, 2018 10:01pm-11:05pm EDT
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public policy events in washington, d.c. and around the country. c-span is brought to you by your cable or satellite provider. >> every weekend book to be offers nonfiction authors and books. you can watch any of our past programs on booktv.org. >> good evening everybody. i'm very glad to see so many of you here. i'm exceptionally pleased to see new faces that i've not seen before. please come back. we do this on a record basis. i'm pleased to be with you tonight. welcome to the louisiana memorial pavilion. i welcome our lifestream audience on c-span.
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my name is doctor martin, i'm the executive director for the institute unwarranted democracy. we are part of the academic department, the higher education right of the museum. not the only source of education. we'd like to say we have a lot of are from the scholars in the audience tonight. we are the research services department. if you have interest talk to myself, jeremy or one of the other people who are research for hire. if you're interested in finding out about a world war ii connection in-year-old family. we offer symposiums and other topics. several days worth of conference
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and we hope you'll join us. we'll talk more after this wonderful program but tonight's guest. i want to recognize any world war ii veterans with this. we recognize them nonetheless. any veterans of the armed forces please rise simply recognize. [applause] also, specifically reference to tonight i have those who work in the field of study and understanding autism might also take a moment to be recognized. [applause] a particular person i need to signal out is my dear friend one
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of our presidential counselors. [applause] we have him to thank for recommending -- for the presentation. melanie is a wonderful friend an important part of this museum as well. doctor shepherd is a prize-winning author she has a bachelor's from harvard in history and literature. i have a bachelor's from louisiana state university. she then went on to get a doctors at the university of california berkeley, she was on the faculty of stanford and is back at berkeley is a senior fellow of institute of european studies. her previous book is multiple award-winning notable book.
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we'll hear about her latest book, asperger's children. it is about getting getting excg reviews. she has broken the life of doctor as -- it's a very challenging study and she tells it in a compassionate and sensitive manner. the new york book of the times review said she has written a book that defies easy categorization and appropriate if on that note, please come to your on asperger's children,.
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[applause] [applause] >> thank you. i made it. thank you so much for the kind introduction an invitation to speak today. can you hear me? thank you, it is an honor. i'll be presenting an overview of my book "asperger's children" which focuses on the creation -- it focuses on the creation of the autism diagnosis. i would like to be sensitive to the subject. i know many people probably know about one person, friend, relative, love toward the has been diagnosed with autism or
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asperger's disorder. what i'm presenting this disturbing. but it's important the information is known. one of 59 children are diagnosed on the autism spectrum in the united states. this is up from one of 5000 in 1975. it is the next financial rise. what's going on? the reasons are much debated, medical, genetic, environmental. one of the factors is the idea of an autism spectrum to cold in the 1990s. for decades, we in the united states went by --'s idea of autism. it looked like children who are similar to one another. they had more severe, cognitive impairments a more limited speech. asked berger had a broader idea of autism.
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he included children with minor challenges. he is credited with what we call the autism spectrum. asked berger developed his diagnosis and he has a -- and he cultivated this as having risked his life of having protect chiln who murdered those who they considered to be disabled. in this view he emphasized the special abilities of children with autism, stressing their value to the state. he was using that diagnosis as a psychiatric' schindler's list. i want to tell this story is the heroic tale of asperger in the third right. when i went to the archives, the
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first file i looked at was enough to show me that s berger was complicit in the racial hygiene policies of the third right. it was not a heroic story, actually horse story. i thought about abandoning the project. the files were terrible and i did not want to tell the story. it has far-reaching implications of how we talk about it today. let's start at the beginning. s berger was born in 19 oh six, this is 50 miles outside of vienna. he excelled in school with talents and languages, he was most want to science and he left at age 19 for medical studies in
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1925 at the university of vienna. vienna was in great turmoil at the time. it had been the cultural capital of europe at the turn of the 20th century. then, after defeat in world war i, the metropolis suffered severe political and economic crisis. street children flooded the institutions and the child development professionals rushed into hell. vienna founded one of the most progressive social welfare systems in the world. it had an army of highly trained social workers and of course eminent psychoanalysts and psychiatrists were donating their time to help the children. one leader was clements, you
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probably never heard of him but he was one of the most prominent people in vienna. he headed the university of vienna's children's hospital and turned it into an internationally renowned pediatric facility. who is progressive, open to experimentation and to the advancement of women and jews. the one idealistic pediatrician came to him about pounding a new kind of clinic. he was game. so they wanted to create a new discipline. he called curative education. the idea was it to integrate medicine, pedagogy and psychology to treat the whole child. was a very progressive idea at the time. asperger would inherent this clinic. -- and his wife created double
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suicide in 1929. they were found in a close embrace after 25 years of marriage. he was replaced by the far right wing figure of hamburger. hamburger had tried the nazi party early on when it was a terrorist organization in austria. here he is inside a conspicuous sunbeam. the photo looks doctored to me. he was known for his anti- scientific attitude. he wanted to on undo dprk's achievement. he wanted doctors to focus on primary care and eugenics. he also purged jewish and liberal faculties. he hired faculty that would be on the far right. one of his first tires was the 25-year-old asperger.
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he said he was eager to help rectify the errors of the leadership. here's a photograph of hospital staff. asperger's on the lower right. so hamburger place asperger in the clinic and promoted him quickly. within two years asperger was named head of the clinic at age 28. over the heads of longtime staffers and people who have worked there for decades, despite asperger's youth and in experience. but he had solid right-wing credentials. he helped memberships in several anti- somatic organizations. in 1934, just ten days after austria declared itself a fascist single party state. asperger joined the single
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party. so, bear with me. this is from a digital history project i did with one of my graduate students. the maps the creation of child psychology and said it psychiatry. we had leaders in the field and track their intellectual and social linkages. we look at who worked with who, who joined the same organizations, who married who? what we found is that intellectually, psychiatry and psychoanalysis cannot be disaggregated. people trained and rub shoulders at each other's institutions. a nobel laureate that you see toward the bottom was an important note in the system and many were rotating through his
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clinic, many intended to be liberal in jewish and opted to go into the trendier field of psychoanalysis. you can see those figures on the lower side of the screen. you see -- and sigmund freud hanging out. others have been tied to that. hamburger and iceberg are isolated with the top right-wing psychologists. the ideological shift predated the nazi annexation of vienna. vienna's institutions and psychiatric community was already divided. asperger and his crew were ready far off.
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meanwhile, let's go inside the education clinic where there is a different, more progressive sense. nurse and educational director generated many therapies and published articles on the importance of compassion and play-based techniques. we would recognize many of the techniques today. clinic staff paid attention to youth who had difficulty socializing. the staff called these children autistic. this was in 1934 they were using the term autistic. they did not consider autistic negative. it was a character trait. so a psychologist published articles about autistic characteristics in the mid- 1930s. there are both jewish and immigrated to the united states. for those who might know the
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history, they immigrated with his help. he was the father of the american. the speculation in my book, we don't know it but i think that they may have brought the idea of autism to canon across the atlantic. canada greatly admired his work in his first case study was based on those notes. meanwhile, a nazi, germany in the 1930s the child psychologists were also diagnosing social awkwardness but were much harsher about it. children were to process strong community bounce and be enthusiastic and this was the
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idea of fascism at the heart of not season. that's what i hope to achieve with my book. so the idea of the fascist collective belonging. paul schroeder who is on the upper left was the leader of nazi child psychiatry. he called this readiness to serve the community. good mood is a famously untranslatable war. i'll stick to how they used it. it was the deep sense of metaphysical connectedness to a greater organize some. it had a national meeting. german's had i but the french didn't. socialist and communist didn't but hitler did. the signified weakness in metaphysical connection. another man asperger followed became one of the top three
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leaders in the program. this is a sampling of different diagnoses that nazi child psychologists were devising. here you see matrixes quantifying children's ability to socialize. apparently their parents were unable to socialize. the point here is that the idea of autism pervaded nazi child psychiatry long before asperger named it. asperger was a young man and he was deeply influenced by the diagnosis. when his time came she would follow in their footsteps. on the morning of march 12, 1938, the german rolled across the border into austria and met a jubilant crowd.
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asperger witnessed tremendous change in vienna. violence against jews regarded by many as the worst. people assaulted jews in the streets, they destroyed homes and synagogues. at the university they were perched. the medical school remove 70% of its faculty. that included three nobel prize winners. hamburger and asperger's clinic were unscathed. it created a vacuum that expanded their opportunity. for asperger, one opportunity was naming his own diagnosis.
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in 1937, before the nazi annexation asperger was against childhood diagnoses. he asserted that there are as many approaches as personalities. then, just months before the annexation asperger introduces his own diagnosis. this group of children who we name autistic has led to a narrowing of the environment. most striking a carry connotations. here is moving from the nonjudgmental tradition of the curative education clinic which talked about this as a character trait and is moving into nazi
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psychiatry. also he begins to work for the nazi government right away in april 1938. he consults for the juvenile justice system and the remedial schools. he joined several nazi organizations, the labor front of the national socialist people welfare which was not remarkab remarkable. he also applied to consult. asperger did not train the nazi party. this is one reason why people have seen him as a resistor way called himself a resistor. not joining the party was not unusual. only three and ten joined the nazi party. hamburger was a prominent nazi.
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they believe they had to be downright -- they would drive out to rural areas in this healthcare and dispense medical advice to people in need. it sounds great but at the same time there acting as the eyes and ears of the regime. they're registering children who are disabled and came from families where there might be alcoholism or hereditary illness. assembling records that would be later put to use. in the fall of 1940 asperger began to work as a consultant. this is the center of racial
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hygiene and coordinated deportations and killings of people who were considered disabled. to give you some background, this was the first program of mass extermination. it predated the holocaust. it was begun by hitler and 39 to get rid of children who are regarded as a drain on the state. i cannot emphasize enough how euthanasia was a misnomer. the vast majority of children were physically healthy but they had physical, mental defects. at least 5000 children perished. this was inside germany.
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it was the deadliest world state hundred children parish. many ordinary people knew what was happening. newspapers tried to deny the killing that there were public protests on the street. this first by the police. asperger certainly knew what was going on as he admitted later in life. there's no question he knew what was happening. in contrast to our images of holocausts, the child euthanasia program was different. it was supposed to become a permanent part of the healthcare system. the holocaust, killing of other groups it was meant to be secret. this was the permanent part of healthcare in the rice. it was supposed to be legal. it was typically by the very doctors and nurses especially women who cared for the daily
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needs. this staff issued youth overdoses of barbiturates until the children grew ill and died, usually of pneumonia. asperger was at the eye of the storm, close to its top leaders in vienna. so hamburger was asperger's mentor. he also conducted numerous lethal experiments at the children's hospital asperger effectively worked on the hall. asperger's posts doctoral studies were infected babies and children with tubercular process in many medical experiments were happening in plain sight. in 1941 they cofounded the vienna society for curative
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education. asperger was the second vice president. -- was head of hygiene. he accelerated the deportation of jews to concentration camps and was municipal director. another cofounder was a fellow postdoctoral student. he was also the head of the adult euthanasia facility with thousands of adults were killed. everyone in vienna knew who he was. he was -- the bbc reported on the activities of the royal british air force dropped leaflets calling him the lord with the syringe. he was engaged to hitler sister, you can see the resemblance.
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hitler disapproved of the match, we don't know why. perhaps he didn't want his sister married a mass murderer. that's what people speculate. he had her apprehended and dispatched to the eastern front which is an effective way to get rid of an undesirable. so, not only did asperger associate with the top leaders, he advocated the transfer of the most disabled children. this is a talk he gave in the published. he said for all difficult cases observation is necessary. asperger followed his own advice. he transferred people in
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numerous capacities. and work for remedial schools in one example, he served as a medical expert on a seven-member commission for the city that evaluated children's transfer from one facility to other destinations. in one day, they evaluated 192 files and dispatched 35 children is incapable of educational development education. in one day they decided they were i unable to be educated. it's unknown and will remain unknown how many children asperger transfer. we know there were children he transferred directly to his clinic who died.
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two and a half-year-old was the youngest of nine children. she was severely disabled by meningitis in diphtheria. they said her accommodation is absolutely necessary. the mother toward the dr. that because sometimes children brought their children to these places in order to be killed. the mother said quote, if the child cannot be helped perhaps it would be better if she should die. she would have nothing in this world anyway. she died two months after the transfer. asperger recommended the transfer of a 5-year-old elizabeth. one nurse wrote in a taylor report that elizabeth could only speak a single word, mama. and that she has a friendly nature, is very affectionate and
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flattering with caregivers. if she is treated strictly she will cry and hug the nurse. elizabeth was killed four months after she was admitted in her brain harvested, kept in a collection of over 400 children's brains in the cellar. one thing i want to shows that asked berger's definition of autism was happening at the same time. he was developing his definition as these child killings were happened. in 1937 he said it was impossible to establish a diagnosis of children. he said they were too unique. then months later he came up with a group of children of autistic psychopaths. they were narrowed relation to
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the environment. in 1940 he change the definition and called the group of abnormal children is the owner children for of every community, they live their own lives and also react abnormally to the needs of the environment. here the language is more majority of them critical. abnormal children behaving and more concerned with social connectedness. children are loners and have a defective emotion. in 1944 asperger writes his postdoctoral thesis for promotion. in it he writes, -- is only himself and not an active member of the greater organism which he is influenced by.
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now this is fascist language. we have children's membership in a greater organism. this is the fascism of the greater organism. he also doubts nazi psychiatry calls autism a disharmony in sites the guys that i have already showed you. his language is harsh. he stresses that cruelty and artistic acts of malice. year-by-year he's changing his definition to become more concerned with children's aptitude for community. asperger did price what he saw as a special ability of some autistic children and technical subjects. he said they were on the favor
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to end of her range. he declared that the artistic personality is a variance of mail intelligence, of the male character. his echoing stereotypes of the time saying boys have a gift for logical ability, precise thinking and girls are more gifted for the concrete and practical. he said them in autism the male pattern is exaggerated to the extreme. things many could be remediated he gave the boys intensive help in therapy. he was more dismissive of girls who show the same trades. the girls were not to be remediated are educated but he recommended them for hormone treatment, sterilization, or worse. let's start with the boys.
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one of his most promise case studies he said that it was impossible to get the boy to play in a group, his eye gaze was odd and mostly went into space. the second case study said the child would never join in with others. he said both should be treated with genuine care and kindness and true understanding and affection. this is the image of asperger we have today. treat the boys with loving kindness. he gave them specialized tutoring in play therapy. in the archives, this is a nonpublished case file i found of christine. he describes her in a similar term. she was difficult to influence from the outside.
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she was closed, hard-to-reach and never cared for the other children. indistinguishable. we didn't know what she really look like. the clinic concluded she simply had -- in the official diagnosis was not a psychiatric diagnosis, but a moral diagnosis. he was born left-handed but had to learn to write with his right hand. selecting me, that's his handwriting at the bottom. because he posed a criminal threat they ordered it correctional institution. another nonpublished case files i saw that two women met even worse fate than christina.
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they said one woman did not participate at all in the community of children and her facial expression was empty and she would stare passively before her with a lack of contact. the second was oblivious of her entire behavior on others. we can't know the girls look like, they were described in similar terms. the clinic transferred both girls. the staff introduced marguerite suggesting that she may have been preselected. she was transferred the same day. asperger's clinic here specified that the second should be sent to a dr. killing said department. the killing department.
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the woman wrote her mother, to not know if we will see each other again because i cannot know if i won't tie on this trip. thankfully, there is no record of the girl's death despite them being handed over to the doctors. the fact remains that asperger was issuing these. so the view of gender was with the view of asperger psychology together. he did say that children may excel in science or other areas. this rhetoric was in keeping with nazi psychiatry. many said a lot of nice things about children they thought could be of value.
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they value children they thought could be brought in. but children they deemed unworthy of life were made this harsh distinction. asperger was no distinction. he said the spectrum range down to the most light and mentally retarded individual. they would grow up to room the street as it grotesque and dilapidated. they could not and will not be helped. by 1944 seeking promotion the definition was deeply shaped by nazi institutions and ideology. after the war, asper claimed he resisted nazism and defended children from the killings. he just did himself from the nazi era work. he hardly ever wrote about this
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again. just a handful of articles and it makes me wonder if he ever believed in it. he turned to religious themes. he probably would have been a footnote in the history of autism research had it not been for more not. a leading british psychiatrist who publicized the diagnosis homes 40 years later, in 1981. this will she switch feels when her daughter was diagnosed with autism and she conducted extensive research. when she published her work she called it asperger's syndrome is a professional courtesy. was she was describing was her own diagnosis than asperger's.
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she wanted a neutral condition so she named to the syndrome. and she dropped the rhetoric and get rid of them saying children worsted district" task. as sandy of a broader autism spectrum gain traction, the american psychiatric association added asperger disorder to the american manual of mental disorders. they did not research asperger's and that sierra activities. usually when you award this year supposed to research the person you're naming the diagnosis after. the apa did not. the rainbow is a simplistic image of the autism spectrum not to cold in the public mind.
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it's an iq chart. on the far left a classic idea of autism and asperger's disorder on the far right. asperger's was seen as distinguishable between high functioning autism. i don't like the terms high functioning and low functioning. it no longer exists as a medical diagnosis. although, it does internationally. this country it no longer does. socially asperger's remains in wide usage. it's a term we applied to loved ones and it's a personality stereotype in popular culture. most of us never think about the man behind the name.
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the question the work brings up is, does the man matter? to medical ethics, does. the medicine naming it disorder after some semantic credit that person and to honor them for their work. in my opinion asperger merits neither. he did not discover autism, his betrayal is at odds with understanding of autism today. besides, his idea was not even his own. second, i do not think he merits the honor, he sent dozens of children to their death as a conscious and willing participants of systematic killing. i propose that we discontinue this asperger for in the new york times and the book was
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reviewed in nature violating autism researcher. he is also calling for us to know no like a ucs berger label. there has been others that have been renamed who found out about their past. the problem is, we don't have an adequate vocabulary to talk about autism. children diagnosed with the children can bear very little semblance to one another. researchers suggest autism is a catchall term. it likely encompasses many conditions and hopefully one day we can split it up into different diagnoses.
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right now autism is an expansive label. the analogy that comes to line is that with female hysteria. basically label for women who cannot control their emotions. they might be suffering from different condensed training conditions. science was not at appointed to segregate the separate conditions. i think that is where we are with autism now. we don't have the vocabulary. it's an interesting question of what we do in the absence of solute? hysteria happened at a time when women were asserting visual roles and the hysterical woman captured the public mind.
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now the idea of autism spectrum draws on exciting about children and then fitting into a fast-paced and fast changing world. unwanted a youth might face a lifetime of disability in isolation. on the other hand might be perceived to have superior abilities. asperger hysteria was a diagnosis for overly emotional woman. autism is a diagnosis of under emotional boys. the main images white, urban middle-class affliction. this isn't to deny the real challenges so children diagnosed with these conditions. my purpose is to show how diagnosis can be a fluid thing and they emerge from patients, doctors, social forces, media
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representations and a continual feedback loop their meanings change over time. i hope with my book i want to underscore the ethics of treating every child's mind with care because we know so little, and showing their warning how easy we can issue labels, medications and interventions. may this give us pause and how we betray others and hope that i can inform discussions of where we go from here. [applause] >> thank you. with the microphone in the back and i gladly bring it to the front for the first question.
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>> thank you. this was informative. after all of your research, how do you feel these doctors rationalize their behaviors? whether it was for the greater good of following orders, why did they do what they did? >> he would start off with that question. a brief anecdote, my daughter just read the diary of van frank we had a backstage talk with the cast afterwards. my daughter raised her hand and asked why did they do it. i think they thought it was a scientific project. that it was the advancement of science.
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in the united states, eugenicists leaders was on the forefront of sterilization laws. nazi germany was often admired by leading the forefront of their child euthanasia program was a logical extension. it was to kill children between zero and three years of age. they very carefully observed, and recorded the daily needs. they sent the reports to berlin and got the reports back. to kill a child was not easy, it was in credibly scientific and deliberate. they believed in it. >> in the byfield albert einstein they noted that i sent
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to not talk until he was four years old. is it referred to him as my stupid nephew. if a 3-year-old albert einstein was brought into asperger's group what would've happened? >> i see where you're going with it. in the 3-year-old not talking in developing and hitting the milestones would be in trouble at the time. it was up to the doctors to report children with disabilities. asperger claimed that he did not report children who you could have reported. there is no way to prove that he may have withheld the names of some children. he may well have rescued some children. if he went into asperger's but
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under law protocol that's how einstein would have been reported. >> you mentioned reasons for asperger's, to have suggestions for what the diagnosis should be called? >> in medical terms right now it's autism spectrum disorder. that is all we have. often people say high functioning and low functioning. i don't think that describes the child, what characteristics are you looking at. my solution is just to say on the spectrum. the people have questions of who that child is they can describe the child or the person and who
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they are. that's personally how i would see it. i don't mean to be too dogmatic. people do identify their children with. for years people have lived with this. how can you tell someone how to identify. i think the medical community going forward should be careful. on the there's other problematic labels. i don't think i'll pretend to be an expert. the consensus was that asperger's was already a problematic diagnosis and that's why it was reclassified in 2013. youth health organizations looking to remove it. >> i have a question online.
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despite the high praise in reviews, he has been held to high regard. have you received any blowback from supporters of his or family members he may have had? is there any resentment for your finding? >> surprisingly, no. i was braced for this. i've had some negative comments on twitter and facebook, but i think the people have not read the book. i think people take it a serious history rather than an attack. >> you mention the protest that occurred at the time, was that driven by parents who did not
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want their children were just general humanistic? >> the slide that is shown, that whole complex would hope children and adults. thousands of adults are being killed and deported off on trains to gas chambers. that's what the public new. it was whispered about them vaguely known. what was the most outraged is this deportation of adults. that's what was known. those are the rumors circulating. the nazi press was denying rumors. was no such thing as gas chambers.
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i should say, for those who know the history of the euthanasia program, see only program of mass murder that the german population protested. they did it quite openly. hitler technically shut down the program as a result of this popular protest. but i think it continued in secret but there were some affect. why was it only the killing of other germans that was seen as objectionable enough to put yourself in line. >> i remember in the 50s and 60s when it first, the concept
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of autism came to the united states. the belief was that it was a cold mother that, the poor mother, not only did she have to deal with autistic child but then everyone was shunning her. they didn't say cold father, it's a cold mother. that she had made this child distant. >> ironically, this is the reason why asperger's praise today. he held that autism was genetic. it was not the mother's fault, but if you look at the context, nazi doctors are concerned with hereditary illness.
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so it's just interesting that today there was inheritable basis. >> i was curious about the drawings in the slide. with a done by the child that was featured? >> i don't know how well you can see the join is a shrunken town. when she was first brought to asperger's clinic she was brought to take a bath. she had a long talk with the nurse about her experiences. the nurse said the child went on and on and i cannot wait for her to shut up. that she drew the pitcher. it was a cheerful house, then
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she put herself as a solitary figure in the corner. select seeing herself as the victim. >> the next question. >> given how readily you uncover these disturbing facts about asperger, why do you think it has taken so long for his reputation to go untainted? >> that's another good question. i think it took a while for nazi crimes to get uncovered in austria anyway. a handful of scholars have known about it, it's just by comparison with other perpetrators he was a minor figure. he was just transferring children.
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so on the scale of perpetrators he was small fries. in the u.s. we have different standards for the horror factor. and in austria, autism is not as well-known of a diagnosis so he was not of interest due to that connection either. the story behind how this was accepted in 1994, the team that was behind it wrote to five different archives saying what to know about asperger's? we don't want to name this after someone who may have been implicated. number of them wrote back saying we do not know anything. one scholar wrote back and so we don't know enough to say no. but, we know enough to say hold on and conduct more research.
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of this child. it was a little uncomfortable with genetics alone. it was possible for a long rhythmic increase. what other things did you think might be playing a role in this increase. in the science of autism to the diagnostic expansion. it was basically the idea of the way these things work beyond that i can't speculate there's all kinds of theories environmental and --
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>> you mentioned experiments being done on the children. did you find something in the archive of those targeted? >> jewish children were not kept at any kind of designated fashion. they were already departed elsewhere. i can't speak to the work because of the legal that was not a factor. >> i should say that 400, almost half the children their brains
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were kept in jars and the seller as well as some other body parts but not all remains. >> key controls the microphone controls the last question. i already know the answer to this, but i'm fascinated by your work. can you please let the crowd know what your next project is? >> is a happier project and it's an interesting museum. i'm writing about switzerland in world war ii. i think switzerland played a terribly important role that is yet to be recognized. in terms of the story my understanding is the plans went through switzerland and the battle plans i hope to uncover a
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lot of the secret stuff that was happening in what you could call europe's post office. i don't know if that is my title or not. >> we hope to have you back for that. [applause] i am pleased to introduce carlo to politics and prose, a italian theoretical physicist is the head of the group and one of the founders of the loop quantum gravity theory. previous books include seven brief lessons on physics and international bestseller translated into more
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