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tv   Book Discussion on In a Different Key  CSPAN  December 27, 2016 8:02pm-8:50pm EST

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herself, the mother of an autistic child said the book does what no other autism book has done, captures all that bewildering and -- aspects. i've wept and rage for reading it all the while thinking yes, this is my experience. brought together with dignity and affection on the page. with the "washington post" year and notables light -- and might just inspire us and help us understand our world. john donvan and caren zucker's book does just that. >> sean, thank you and welcome everybody. it's a great book. i feel bad that you've got might but back over there. it's a very moving book and what's great about it is there
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are individuals against the system stuff which is very moving and very real. the stories and social history so it's really a great read so congratulations, guys. >> thank you. >> i guess you know there are a lot of things about the book that did fascinate me and move me but why don't we start where you started which is how you both got interested in it and what led you to the relationship not your relationship together but abc and how this became a big story for you, caren. >> one year ago i had a son with autism and not long after that i figured out i would need to do something to try to help him to understand him better. i asked john to help me. we were a team of journalists
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working together. >> esop him as a story right away. >> no, actually john's side as the story right away and he said we were doing this very intensive program 40 hours a week, four hours of speech. we were going to beat this as we thought it was beautiful. for some people, it is and so it was the day in mickey's life was really intense that would have made great television. john said let's do a day in the life of mickey and i said yes, as long as i'm not in it which you can't really do a story about a mother and her son that she is not added -- not in it so we decided to do a story on the treatment he was in at that time and show that it didn't help all children but it did help some
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and the whole idea was one. we got abc news, not the main abc news that nightline because nobody was really talking about autism. >> people didn't really know what we were talking about when we brought it to their editors. they had seen rainman and didn't have the sense that was really going to be a story are relevant to a broad audience. that surprised me a little bit just because medical stories and health are such an enormous part of the american narrative. i'm surprised no one was interested. there are a lot of stories that come along and we are pitched them all the time by families who are dealing with one or another issue like that and we work with them all the time. autism has that sort of profile. the inside track was caren zucker just kept pushing and pushing until nightline said yes to it.
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>> the book, the way that it begins i think was this man donald triplett forest who was the first person diagnosed with autism. tell us a little bit about him and how you got to find him and develop that. >> long story short we started to do with series on autism and at some point along the way john and i decided we need to do something that would be more everlasting to dig into the history of autism. during that digging. >> we learned through the grapevine that the first person ever diagnosed with autism what we learned from medical literature that verse person diagnosed with autism was not diagnosed until 943 -- 1943. that person we learned through the grapevine was still living somewhere in the united states many years later and by looking for cruz in the reports written about him in the 1930s and the
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1940s we found out what town he was living in and it was a little town in mississippi. we knew his first name is donald but in the literature they only gave the initial of his last name which was. caren who is a superb investigative reporter but also had a dial telephone started going through the t's and you hit pay dirt one day. >> there were a number of donald's but not many in mississippi and one day i called then i got an answer, and answering machine and the machine picks up and says hello, and i hope you are having a happy spring and you should have a happy fall too and even a happy christmas. have a wonderful 2007. i hung up the phone and i called john and i said we have got it, i know it's him.
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>> this is our guy. >> and it was, no doubt. >> the story of donald t the beginning part of the story he was very very severely limited in his ability to communicate and his ability to relate to people. he was a little boy who didn't run to his mom or dad for attention. given a toy he would spin it and not use it in the way it was supposed to be used and his language is called echo alec. he would repay the question over and over and over again and that's a classic sign and people with autism. you go forward to the present day when we got to know donald and the story was astounding. we got down here and we found that man and karen will tell you in a minute the resistance we met on the community and trying to find out story but we met that man who at that point in the 70s was speaking who was
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driving a cadillac, who was playing golf, who is traveling around the world, who had friends who live independently on his own who still definitely had autism but he had grown and matured and flourished spectacularly. we think that is because of him and his inherent potential but we also think it was because of what happened to him in that little town. >> the town in mississippi embraced donald. donald was from a wealthy family his families owned a bank and he was well-respected. >> if you wanted to get a mortgage you did not mess with the triplett kid. >> there was a little bit of cheer to that. >> it's not that -- life is more complicated than that and donald had all the elements and part of that was that he had a family that was respected in the community.
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because they were respected they respected donald and they embraced him. they embraced him so much that we came down the first time to do the story and we were told by people and they literally lectured us, if they -- if we mess with donald we -- they would track us down and get us. nobody messed with donald. >> what happened is he grew up in this idea of donald took hold and he began, his mother used her influence to get him where he was not wanted in the local public schools. she used her poll to get them into the local public school and she used her pulled to get him a space on a nearby farm where he spent a couple of years learning just being able to wander freely and to have structured this life. he worked with the farm chores. donald ended up getting into high school. by that time you really see him flourishing in his personality. it was only about three years behind everybody else in his
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class but the kids, you would expect them to be bullied and teased which by the way is the experience of a lot of people who have autism today in the public schools. we talked with people from donald's era who are in their 70s and 80s and they thought he was kind of a genius. everywhere in town but to remember about don triplett? he was the smartest kid in the school. >> in fact there's a story about him counting all the bricks of the entire school. >> true or not we are not sure. >> actually this is a legend. >> one day he was asked by some kids hey week. you can't really fast so how many bricks on the side of the school building there? >> he talked about a number. they all said wow and they ran off and told their friends and
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the story is still alive 50 years later. nobody actually counted the bricks. >> or asked him about it until a few years ago. we said tell us a brick story and he told us that he hadn't counted them. he just wanted them to like him. >> and it worked. they really fired him. >> there's a thin plastic story about donald triplett and his potential was realized. the things that are to me the most stunning about the book and that is a very beautiful story is the way mothers and parents were taught to think about children who we think of as today as having autism. so talk a little bit about this,
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because this notion that somehow you institutionalize and move on the history of found i assume you didn't know before you started. >> the interesting thing when we set out to find the history it hadn't been written in many cases so we ended up piecing together fragments of things here and there interviews and scattered medical writings and videotapes and radio recordings and maps and all kinds of things depend together. one thing that was fairly well-established business refrigerator mother. i don't know if you've heard this term but until about 1970, between 1943 and in 1971 and mom took her child with autism and said what's going on with my child they answer was welcoming you at did this to your child by failing to let their child enough.
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caren has met some of these mothers who have experienced this for today are in their 80s. you spend hours with them and i will stop talking. the part that impressed me was it took hours but the shame is still there even though they didn't believe it anymore. >> a lot of the history is very dark and if you are a mother this is one of those stories that is just heartbreaking. here is, you are living life and doing everything it can to help this child who is so different and sometimes so complicated and sometimes so disabled and now you are being blamed for it. one of the mothers i met, it took her a while event to get the diagnosis. once she got the diagnosis she tried to find a place for him to get some kind of help. they were doing some country but a new york hospital but the deal
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was the only way that you can get your son into a program or your daughter was if you went because you were the problem. you need it to be psychoanalyze didn't discuss what you did to cause the autism. rita who was an educated woman who knows a lot about psychology read the book and she knew, this is my fault so i have to figure out what to do. one day she was sitting in a session with a psychologist and she tells the story after almost three hours of talking, she hadn't told the stories for years or even decades. she tells the story where she says so i'm sitting there and all of a sudden i realize what happened. it was me. i remember. i thought he looked like a chicken. he was john does come he was yellow and his hair was standing
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up and i thought he's like a little chicken and that causes autism. and she believed it because everybody else believed it. it was the tragedy of the time that it was your fault. if you're a parent and you have a child with autism the first thing you think is what can i do to help them? it's my fault so maybe i can help them. this theory went on and on and on. >> the thing is it's so complex because you can't possibly help your child so this issue that is your responsibility and the difference between responsibility and blame can be subtle. if you are going to be like mrs. triplett were some of the characters in your book you decided to devote your time and get rid of everything else in your life and to vote your life to help this child.
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it's actually a lot to ask of someone. the whole question of parenting today and what responsibility we have is very well displayed in the book. we now live in a world and this is where the story of rightness. we now live in the world that has been created by the things that took place in the 1950s, 60s, 70s and 80s around the country by parents who decided to stand up to the attitude and that attitude that other mammoths -- manifestations. the shame is so powerful. the parents were told routinely to send their kids away to cetaceans. they were told to put the children away and try to move on >> these were not bad parents. these were parents like all of
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us sitting here. >> doctors fox told us to do that. we were shocked in the maternity if a child is not -- the child should be removed immediately from the parents control and put into an institution and even said that this conversation with the father as the mother is probably going to try to fight it. the reality is that many parents including rita did send their children to institutions not because they couldn't handle the burden that because the pressure in the shame were so intense, they were being told you are doing the right thing but in some cases they probably couldn't handle the child. >> it's absolutely true because some of the kids would be so difficult to manage and not everybody is necessarily up to
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that but there's a solution to that. >> where did you send your child? the school system legally said we don't want you here. >> until the 70s. >> 1975 legislation was finally passed in which the federal government said if you want our money you never turn away a child. you find a solution for that child. >> that partly came from a political movement by parents. >> it was entirely led by parents. >> the history of autism in so many ways is about parental love. and it's not just about autism. any parent, what would you do for your child? there is nothing we wouldn't do for our children and that's why we are where we are today. >> you mentioned that are spock but you haven't mentioned bettelheim.
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i remember as a child this is mr. child psychology and he is completely discredited today but it was a very painful process. >> there people in the room who know who he was and for those of you who don't he was the doctor filament.o. -- dr. oz of his day. it was all about psychology and psychiatry. he talked to parents about how to raise their kids. he wasn't dr. oz. he wasn't doctor really anything but it turns out that his doctorate with cheap ticked up in austria was in art history. >> he was a really good. >> he convinced them he was a psychologist and a psychiatrist and he was given charge of the school that became a media mecca for the miracles that that will hindmost bringing about supposedly in the treatment of
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children with autism and an almost ridiculously freudian way i will give an example. he writes of book where the theme is repeatedly the mothers did this, the mothers did this and the children are afraid of this -- their mothers. he is obsessed with the weather's. children and adults are possessed with a narrow topic. they become experts whether its train schedules. this girl was obsessed with the weather and bettelheim actually wrote well, here is what was really going on. if you look at the word whether and break it up it actually says the aid her in the girl was terrified of being devoured by her mother and that is why she was assessed with the weather. i want to tell you when the book came out in 1967 the praise for bettelheim was astounding from
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"the new york times," the new republic. he was seen, everybody bought into this emperor with no clothing come he was a genius and his deep osaka go perception with what was really going on with children was astounding. that's the mothers were up against, this guy saying it was them and the rest the world saying he was a genius. >> everyone took it seriously and today there are plenty of people who assume the community is wrong about everything else to hand and you are but one of the things i admire about it is when you tell the story you don't come out with that argument. it can be quite helpful in understanding autism. >> there was very little science done until then. two families independently of
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one another created organizations to study the science. researchers don't study something if there is no money and these families raise money and brought an entire fields of scientists who now research autism. we have come so far in understanding so many different nuances. >> with me ask you how little we do know because one of the things that struck the also about the book is where sitting here talking about the disease and we don't know what its contours are and if i understand from what you wrote there no medical indicators of it. there are traits that we ascribe then there's disagreement about it. >> how we define autism has been a moving target and fuzzy at the edges from the very beginning. the definitions in the textbooks have changed and been revised
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repeatedly, shrunk and expanded and changed medically. it's had many repercussions. one is that makes it difficult to know whether there's more autism than there needs to be because we are comparing apples and oranges. the rate of autism is to be 4.5 children per 10,000. we finally found out where that number comes from. it's interesting in the field you throw these numbers around and you say where do they come from? even the experts aren't sure. they got it from another person i heard it from. 4.5 out of 10,000 comes from a study from a man who was given an assignment as a relatively junior researcher to come up with a statistic for the borough of middlesex. they wanted to find out how much they should deliver in terms of services so they sit these find out what the raiders. he got a list of all the
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children that were diagnosed with autism by sending out questionnaires to all the schools and he got back thousands of questionnaires. he then went with his wife who is a research assistant over months and months one house at a time, one mental institution at a time to count how many children have autism. his problem was that when he went to the textbook to find here's the definition of autism i'm looking for there was none. there were all kinds of conflicting discussions of even what the condition was called so this junior guy instructed his own checklist and he came up with a count. they came out to about 60 people many ranked all the 60 kids by greater severity to less and the really amazing thing he said was that a certain point he just thought well i can't say they'll have autism so he drew a line halfway down the list. he said okay those above have autism and those below don't have autism.
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he was very honest by the way. he wasn't trying to pull a fast one. he kept referring to how arbitrary this was. he said the line itself is arbitrary. out of this came his statistics of 4.5 out of 10,000 children and this particular place in this particular year had autism so that was the baseline. anything he said at the time, i don't really think studying the prevalence of autism makes sense until we figure out a definition >> does every autistic child grow up to be donald triplett? >> absolutely not. what we need to do is we need to provide services to help create fulfilling lives for people who have autism. john and i tell the story in a book about something we really feel is the essence.
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>> the scene on the bus that took place in 2007 in new jersey and there was a young man with autism on the verge of adulthood. he was pretty much it and adults riding alone in the seat himself and he didn't have language. he began making noises and he began rocking and he began flipping his fingers in front of his face and this really agitated the two guys sitting him behind him. he leaned into him they give him a sort of hey buddy what is with you, man? what is your problem, man? >> all of a sudden another passenger stands at the seat and he says he's got autism, what is wrong with you? what is your problem? why don't you get off his back? >> they lined up behind a kid in that moment and in a way. >> is the essence of what we need to do in society. we need to embrace the person that is different and it's the bully that needs to get off the bus.
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>> that's not just a metaphor. >> that's beautiful. i think on that very powerful nokia our conversation and take questions from the audience. [inaudible] [inaudible] [inaudible] >> if i were to summarize what
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you're asking is there any plan or any scheme in place to put together people with complementary skills so they make a pretty good team and the answer is not exact with the sort of. people are beginning to recognize individuals with autism particularly they are people who are at that part of the spectrum where they are capable of independent, that part of the spectrum where real creativity and talent are sometimes genius level, people on that part of the spectrum actually, work can be found for them, jobs can be found for them and there was a man and denmark we broke the book to start a company called the specialist who has a son with autism and took out a mortgage on his house to start a company to prove that individuals with an autistic traits actually have economic value. what he was really saying is having a job is the way to
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independence in life so we started this company where he hires almost exclusively people who have autism and uses their talents from memory for small detail for understanding patterns to actually test software. he knows however that they don't do very well with job interviews so he works around with that. >> he spread it all over europe and is trying to spread it to this country. harder in this country. >> he knows they have a hard time doing job interviews so instead of sitting down more people would have difficulty making eye contact he gives them lego assignment and he puts together teams of people. i want to see you work as a team to create a robot that can do this or that. in his office there's a big room with a big sandbox and that's the job interview room.
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[inaudible] >> right now autism, within that spectrum are people who are severely disabled and struggle with everything from talking banging their head against a wall doing anything independent and on the other end of the spectrum college professor who just has problems with social skills or it could be somebody who has their ph.d. and is bagging groceries because they can't figure out how to have a job. we can change the definition of autism that within that spectrum we would find different types of people that would fit in different holes.
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right now the spectrum is so huge that it's hard to compare. >> the positives of the spectrum however, services exactly. if you can get a diagnosis for autism particularly because the parent activism but on the agenda over the last 35 years the diagnosis has real meaning and broke cloud through services. [inaudible] [inaudible]
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>> so you are asking about two guys traveling around the world who are not able to speak using the spoken language and who communicate through typing. we haven't met those gentlemen so we can't comment on them but that question, people who cannot speak and finding other ways to communicate is something we visit. you can go to a lot of schools and ipad has a revolutionary development for children who cannot communicate verbally but they can see them working with symbols and creating basic grammar. that takes over from a system that's been in place for many years which is the picture exchange communication system that's where children were
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taught pictures of things. and that was also a grammar of its own. if you go back to the 60s there was a woman who harnessed a machine called the talking typewriter, this huge thing the size of a refrigerator. the attempt to get people to get people to speak has always been there and the size been controversial because suddenly the language that emerges from people who particularly in the early days of this were denied education. nobody bothered to teach him to read or write. suddenly they were producing as you say incredibly eloquent language very perceptive thoughts but there was a scandal associated with this and the enthusiasm for a process facilitated communication. >> we tell that story in her look. the book is just out so i don't
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know if you have read it. >> is a pretty shocking story. just tell it really quick. >> the quick version is the teacher was -- a young woman with autism and the family was and abusing her. >> bear with a keyboard and it was found when the facilitator supported the hand held that perhaps like that or perhaps hear the child and apparently was studied and began to type out coherent language may be roughly in the beginning but better and better with practice and it was understood and asserted that the language was coming from the child in the facilitator was merely stating her throughout the process and how this came in some cases
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astounding language and people. part of what happened was the media went over this. primetime live, television show did major stories about the miracle of the syndication emerging from these children and the results by the way. all of a sudden in one place after another the messages that began to emerge were my father touched me in a properly, my father raped me. an astounding number of assertions of sexual abuse were taking place and the fathers were almost always and sometimes the siblings were arrested and held on charges of sexual abuse, sexual assault based on the testimony that came through this process. this is when the process finally
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got a real test because there were defense attorneys who brought in experts. >> a particular story that we were talking about is a lawyer brought in an expert who studies communication between people who have autism and he had a very simple plan to be able to test if it was real or not which was two on one side the person who had autism would see a picture in the facilitator would see a picture. if the facilitator and the person that she was typing for at the same answer we would know that they were communicating. in every single instance when the person with autism side photo and the facilitator saw something else they typed the wrong thing because they hadn't seen the picture and it was a
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black-and-white test that this person was -- you know i want to back up just a little bit is i do think the facilitator, this wasn't malicious. they were trying to do something awful to these families. they believe that -- was coming to them and they were delusional and i'm afraid there's a lot of that. it stopped after the stories got out in the 90s but 10 years later we would hear about stories where people would be in jail because their child had accused him of murder, i'm sorry of and its all about hope. >> it's interesting that came at the same time as child sexual abuse scandals.
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>> it's a zeitgeist out there. >> a lot of these facilitators were dedicated teachers and they wanted to protect them. >> the important thing about the story as it began with the same theme of parental love and hope and what can we do to help our child? this wasn't meant to be a destructive thing. it was about believing in your kids and wanting to be able to connect with your child and its very sad and tragic. >> we'll take a couple more questions. [inaudible] [inaudible]
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[inaudible] >> maybe you need to repeat the question a little bit. caren will repeat the question. >> basically the question is what do you do if you have an adult with autism? >> into is going to pay for it? >> that is the point. who wants a mediocre home for their child, right?
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[inaudible] >> exact way. that is part of the point that we are trying to engage people in with this book which is if you look at the past so that we can have a better future and if you look at the past he never would have imagined that it was so awful and it got so much better and now this next generation of families, this that's who's going to fight for it are going to change the world their party out there. people who are here today that are part of this tiny fund-raiser, they are trying to change the world by helping to provide services and homes for people that don't have them so we really are adults and i
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figured out, not perfectly but we have moved light-years from where we were. >> her children. >> for children and adults. [inaudible] >> the question was what's going on in your city in terms of service is particularly three schools? >> i can tell you compared to 20 years ago we have services, we have schools in new york, we have public schools, we have charter schools and when my son was diagnosed there was nothing.
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i had to make the home program and i had to create it from scratch. i had to fight to get the services and i wasn't even able to get the money back from the state because the people i was working with didn't believe in what we were doing. i mean, we have come so far in understanding the needs of children with autism. not far enough but we really are starting to try to support them and part of that again the parents bought the system and they fought the school system. it's a cycle. how else do they do it? [inaudible] my child is on the spectrum and he is 12 years old. at what point is apparent how
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are they going to function in the world? [inaudible] at what point do you begin to see or get indications of their ability to actually function? >> when do you know? when do you know how capable they will beat the independent? i have watched parents work this question through for the 15 years we have been working on this. you can take it but it's going to be great, i've got to be really stick to where you are today. >> i think you don't lose hope. [inaudible] what are the indicators? he spoke earlier on npr about my
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child has perfect pitch and plays the piano. he does all these various things but the skills he is are demonstrative on the spectrum but how does the transition to those in actually function in the world? >> it's a great question. i don't have the answer. i'm still working on it. my son is 21 and i felt since the early years there were all these steps i could take so i was always on the five-year plan and now that he's 21 i am, okay now what am i going to do with the rest of his life? do you don't know how much more they will continue to grow and how they will change. adolescents particularly in
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autism is much, much later. 12 years old, you have five or six years before recent adolescent and that changes everything. i don't think anybody can answer the question right now. >> it's been a great conversation. >> can i say one thing and john would like to say one thing. >> you miss the queue. >> you all miss the queue. have you all worked with john donvan before? >> i want to thank you all for doing this for us. [applause] i don't know if everybody is where this but barnes & noble this is what they call a book fair and barnes and noble donates a portion of the proceeds of everything they are selling tonight not just our book but the eyeglasses in the coffee and editing us to benefit the two organizations that we respect a lot. one of them is called cue sack and it's been around since willowbrook was shut down and all of those young adults came out. cue sack stepped in and parents
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again starting a organization for the autistic community. they are our friends and we respect what they do a lot so again we encourage you to step up for them and by 10,000 books tonight. >> and new york who started the first charter school in the country for children with autism and who is now working on adult services and adult homes and adult education. new york colin operates for autism. >> 10,000 books everybody. thank you all very much. [applause] [inaudible conversations]
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>> that was john donvan and caren zucker about their book on autism. one of the "washington post" notable books of 2016. iam steve levingston and nonfiction editor of the "washington post." if patricia bell-scott "the firebrand and the first lady". we are denuded eleanor roosevelt was extraordinary. the great surprise in this book is the remarkable costar pauli murray. murray was a black woman 26
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years younger than eleanor roosevelt. in 1938 she sent a letter to president roosevelt complaining that she was denied admission to the university of north carolina because of her race. eleanor roosevelt reply, beginning at decade-long correspondence and friendship between the two women. patricia bell scott sometimes contentious relationship. the two women got together at the white house and roosevelt home and hide park in new york city. eleanor admired murray for her spirit and her idealism. but she didn't stop herself from rebuking her friend when murray pushed the president to hard on racial questions. murray was a brilliant woman ahead of her time who had to battle for all she achieve. she was, feminist and socialist who she was first in her last of howard university law school pritchett got a doctorate of law at yale and she was the first african-american woman ordained a minister in the episcopal church.


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