Skip to main content

tv   Book Discussion on In a Different Key  CSPAN  December 28, 2016 12:03am-12:51am EST

12:03 am
has done, capture those deceptive aspects while thinking this is my experience brought together with dignity and affection. this is our notables list that in negative and inspire us and help us to understand our world. this book does just that. >> this is a great book. it is very moving and what is great about it but it is
12:04 am
a lot of individuals against the system stuff that is moving and real. some of the stories and social history is a great read. congratulations.a leges there are things that did fascinate me and moved me but how you both got interested and not only together but how this became a big story. >> 21 years ago i had a son with autism not long after i figured i needed to do something to try to help us understand it better and i ask john to help me.
12:05 am
>> q saw your kid is a story right away quick. >> veteran this said john saw my kid is a story right away.40 hours and and for some people it is. the day bush is intense to say yes long as i am not in'm it for a w. cannot do a story about a mother and a child if she is not in it so we decided to do on theim treatment received at the time that it doesn't help all children. but it did help some. one.
12:06 am
we got abc news. not the main abc news but my mind because nobody was talking about to that -- autism. i maybe they had seen rain me and they didn't have the sense are be relevant. >> that surprises me of a bid because struggling andries medical stories of the american narrative i am surprised. >> and new work with them all the time and the inside track as they kept pushing and pushing until they said yes. >> but the book begins with
12:07 am
donald triplett forest the first person diagnosed with optimism. -- autism. tell us about that. >> long story short at some point along the way we decided we need to do something that was more ao everlasting and really dig into the history of what to some -- into autism. we realize a first persontu was not diagnosed until 1943. is that recent and that person was still living somewhere in the united states.
12:08 am
harry found out what town he was living and but he only gave the initial of his last name so karen uss superb investigative reporter and knew how to dial a telephone there were some donald's then one day and called the answering machine says i hope your having a happy spring and you should have a happy fall and even a happy christmas. have a wonderful 2007 and then hung up the phone is everybody. we got a.ow it' and it was.
12:09 am
no doubt.ld t the >> but the two parts of the story severely limited of his ability to communicateteand and related to people.'t his mom and dad paid him no attention his language if you said something he wed repeat the question over and over that is a classic sign of optimism -- autism and then the story is astounding we cut down there and we found if the man we have a little bit of resistance from the community but we met a man who was speaking and driving a cadillac and playing golf and travelinggo
12:10 am
around the world who had friends living independently on his own in definitely had autism been he had grown and matured and flourished spectacularly in be think that is because of him and his inherent potential but also because of what happened to end that little town in mississippi. you can also say donald was roundtable family and was well-respected. >> if you wanted to yet a mortgage you did not mess k with uh triplicated. there is some truth to that. >> so part of that is he had a family that was respected in the community because they were respected they
12:11 am
respected donald and they embraced him so much when we came down we were told by people literally their election bass and when we met with him they would track this down because nobody would mess with the donald.body mes >> and as he grew up batf him tell cold and but she used of poll to get some space on a nearby farm just being able to wander free to have structure. she did farm chores.nald end and then ended up getting into high-school but then flourishing in his personality.
12:12 am
you expect them to be bullied and teased. schools. we talk with people of his era better in their '70s and '80s they thought he was said genius.enius. that he was the smartest kid in the of school. >> that he would count all of the bricks. >> we're not sure but this is his legend we hear you count basso how many bricks are in the side of the building? >> he would give them a number and they wouldr. believe him. and then they ran off and told their friends it is still live 60 years later
12:13 am
and nobody has asked him. and then to say tell the of brick story and he had not counted them that day. he just wanted them to like tim. >> it works. they acquired him. there is a fantastic story to embrace him in the way the his potential was realized in the amazing fashion then to me what is most stunning about the of book the way mothers and parents were taught to think about children so talk about this because of the notion that somehow it is your
12:14 am
fault corrects to institutionalize or move on. >> the interesting thing so they ended a two piece zero together mosaics here and there. and medical writings. videotapes. then this refrigerator mother theory but through 1970 when a mom took her child with autism to the experts and they said you did this to your child by failing to love the child and caren zucker has met some of these mothers that
12:15 am
are in their 80s and u.s. spent hours with them.. what impressed me is it took hours but the shame was still there even though they did not believe it anymore. >> history is very dark. if your mother is one of those stories you're already living this life with a child who was so different and complicated and now you are blamed for it. one of the mothers and it took her a while to get the diagnosis that she tried to find a place for him to have treatment that she could get her son into but the only
12:16 am
way to get your said into the program as sun is you got there be because you with the problem you needed to be psychoanalyzed and what you did. so rita was educated and book an read the book can said this is my fault that to figure out what to do some shoes sitting in a session with their psychologist and tells the story after almost three hours of talking over decades and says i am saying there i got did. i remember. i thought he looked like a chicken he with shallow is c there was standing up and ii thought he is like a little
12:17 am
chicken n i causing is autism. mad she believe this because everybody else did and it was uh tragedy at the time w that it was your fault. if you are a parent with a child with autism the first thing what can i do to help it's? it is my fault maybe i can so so what would go on and on. >> is so complex the issue can possibly help your child so the issue of it insures bonds ability and blame can be settled so obviously if you're going to be like these and other characters uh of your book to develop your time to help this child reach his or her potential of this lot to ask someone so you are being told this
12:18 am
leeway to go forward. settled question of parenting today is displayed in the book. so now we live in a worldow liv that has been created by things that to a place through the eighties around0s the country by parents who decided to stand up to this attitude and had other manifestations. into send them to unseat institutions. and to try to move on. with their normal kid. >> the dad is what society says to do.
12:19 am
>> dr. spock said to do that we were stunned to find 1549 recommendation if the child was manifesting evidence of a disability that was visible the child shall debate removed immediatelyn put into white institution even have this conversation with the father because the mother will probably try to fight it. the reality is that many many parents did to send their children to institutions not because they couldn't handle the burden but the pressure and shame marceau intense they were told you were doing thehe right thing but sometimes they probably could not handle the child. >> but because some of the kids were so difficult to manage not everybody is up a to that but there is a solution to that and it did
12:20 am
not exist yet. >> where did you send your child? the school system legally said we don't want you here. >> until 1975 legislation was passed in which the federal government said to the public school systems if you want our money never treadway a child to find a solution. >> and that came from the political movement of parents. >> entirely led by parents. >> it is the history in so many ways. it isn't just about autism but what will lead you do for your child? and that is why we are where we are today. >> but as us child mr. child psychology who is completely
12:21 am
discredited today but it is a painful process. >> people know who battled time was he was the doctor felt of est. except he was all about psychology andnd psychiatry about advice how to raise our kids he was not dr. eye is but it turned out his doctorate was in an art history. >> key was a very good shogunate convince the university of chicago president he was a psychologist says psychiatrist and was given charge of base school be a media mecca for the schools that dr. bettelheim was bringing about with children with autism in a ridiculous
12:22 am
way i will give you one example he writes in the book the theme is repeated the the mothers did this. the children are afraid of their mothers. he talked about a girl obsessed with the weather. normally a are obsess with a narrow topic train schedules or the of model t but she was obsess with the weather and dr. bettelheim actually wrote here is what is really going on if you look at the word whether to break it up it says we hate her and she wishes devoured by her mother and that is why she is obsess with the weather so when this came out 1967e the praise for dr. bettelheim was astounding
12:23 am
from the new york times, the new republic, everybody bought into the emperor's new clothes that he was a genius with this deep philosophical perception that it was astounding so that is what the mothers were up against. >> host: was done in the rest of the world. >> so what is interesting to me is the say in terrific establishment was so wrong added time that today there plenty of people that our wrong about everything else but your book the way you tell the story you don't't don't, with that argument. so that it could be quite helpful with the science to understand autism. >> there was very little science done and his family is independently of one another step in deciding as
12:24 am
but there were no scientist getting in researchers don't study anything if there is no money in it so they brought in the entire field of scientist who now research autism and we have come so far to understand the different and nuances. >> but how little we do knowou because was struck me about your book is the year sitting here talking about a disease redondo the contours , and no medical indicators, is a set of traits that we ascribe and there is disagreement how we define it is a moving target from the very beginning. the definition and the textbooks have been changed and revised and expanded and
12:25 am
changed dramatically. but the repercussions in makes it difficult to know if there is more than their use to be because we are comparing apples and oranges that the rate used to be 4.5 children for every 10,000 but we finally found out where the number comes from.esti you throw the numbers around where did they come from? even the experts are not sure. they got a from another person in comes from the 1966 study from a man named a london who was given the assignment as a junior researcher to come up with the statistics to find out how much they should deliver with services said depending on the race and he got a list of all children that were diagnosed by sending out questionnaires to all of
12:26 am
the schools then he went with his wife to was his research assistant over months and months one how sad time for one mental institution at a time to count how many had autism but his problem was when he went to the textbook definition there was none. there were conflicting discussions this is what it was called. said he constructed his own checklist and came up with say count it was about 60 people and he would rank them than what was amazing is that a certain point he said it cannot say they alll have autism said he july and half write-down the list those above have it those below do not. hugh was very honest by the
12:27 am
way he was not pulling a fast one he kept saying howw arbitrary was that line was arbitrary with his statistic that in this particular place in that year. so that is the baseline and even he said that the time i i don't really think studying the prevalence of buses and makes much sense until we figure out a definition. >> can every autistic child grow up to be donald triplett forest but. >> that is the dream. we need to provide services to help create fulfilling lives. we tell the story at the end of the book of the essence.se >> case seen on the of busesbu that took place in new
12:28 am
jersey and is a young man on the verge of adult and was writing by himself and not have language with began making noises and was rocking and flipping his fingers in front of his face and a really agitated the two guys sitting behind him so they said what is with you? what is your problem quite. >> also this other passenger said he has autism what is wrong with few? get off his back. told us would lineup behind him in that moment and. >> it is the essence of what we need to do as a societyra to embrace the person thate is different and the of believe needs to get off the bus spirit that is not just a metaphor.
12:29 am
>> it is beautiful. so now we will stop our conversation in take questions from the audience. >> [inaudible] [inaudible] we. >> to summarize this there aski any plan to put together
12:30 am
people with complementary skills so they make the good team? not exactly but sorts of. . .
12:31 am
people who have autism and use their talents for memory and small detail and extending patterns to actually test software. he knows, however, they don't do well in job interviews, so there is a workaround .op >> he is trying to spread it in this country. >> you missed my job interviews. he knows they have a hard timeow doing job interviews, so instead of sitting down where people would have difficulty making eye contact, he gives them assignments and puts together teams of people to create this m or that. so he has a big room with a sandbox if that is the job interview room.
12:32 am
>> [inaudible] >> right now it's the autism spectrum and within that spectrum are people that are severely disabled in the struggle with everything from talking to banging their head against a wall to dealing with anything even mildly and didn't. then on the other end of thehe r spectrum, it could be a college professor that just has problems with social skills or it could be somebody that has a phd and is bagging groceries because they can't figure out how to have a job and so we could be changing the definition of autism, but probably there are autism and that spectrum we could find people to fit different colds and right now
12:33 am
the spectrum is so huge that it's hard to compare. >> the positives, however services that you can get the y diagnosis particularly because of the pair and activism to put autism on the agenda over theth last 35 years and forced the schools to do something about it, it has a meaning in a cloud when it comes to the services.
12:34 am
>> [inaudible] you are asking about a film that's about two guys traveling around the world who are not able to speak using the spokengu language and who communicates through typing.en we haven't met those gentlemen, so we can't comment on them. but the question of people who cannot speak to find other ways to communicate is in the story of autism into something we visit. there is no question today you can go to a lot of schools and it has been a revolutionary development for a children who cannot communicate verbally but you can see them creating a sort of basic grammar that takes over from a system that has been in place for many years in the picture exchange communication system and that is where children were taught to take things back and returned them
12:35 am
and that was a kind of grammar of its own. if you go back to the 60s, there was a woman that harnessed a machine and a voice would speak so the attempt to get people to speak has always been there and it's been controversial because suddenly,o the language that emerges from people who nobody bothered to teach them to read or write and they were producing an incredibly eloquent language and thoughts, but there was a scandal associated in this and f it was the enthusiasm called the facilitated communication. >> we tell that story in our book and i'm not sure if you have read it.
12:36 am
>> it's pretty shocking story to tell it quickly. >> the quick version, a teacher that said she was facilitating for a young woman with autism said her family, father, brother were raping and abusing her. >> we need to explain what it is to facilitate. >> the child's hand might wander around, and it was found and was said that when a physicalwa theater supported that and come with to the child independentlys studied and reassured by that and began to type out coherent language may be roughly in the beginning but better and better with practice and it wasd understood and asserted that the language was coming from the child and was maybe steady in the process with astounding
12:37 am
language of people that have never been taught to read or write. all of a sudden one place after another of the messages that began to emerge were my father touched me inappropriately, my father raped me, and once rapedm astounding number of assertions were taking place and the fathers were almost always, sometimes the mother than otherd sometimes the siblings were arrested and held on charges of sexual abuse and sexual assault. based on the testimony that came through this process, this is when the process finally got a
12:38 am
test because there were defense attorneys that brought in experts and you can tell what happened because it is pretty devastating. >> in the particular story that we were talking about, there was a lawyer brought in he had a simple plan to be able to test if it was real or not. on that one side, the person that had altered somewhat paint a picture and on the other side a facilitator with the picture. if the person she was typing for had the same answer, then we would know they were communicating. in every single instance when the person with autism solve the photograph and the facilitators will something else, they had the wrong thing because they haven't seen the picture. it was a black-and-white test
12:39 am
that this person was -- i want to back up a little bit because i think the facilitators p6 this was malicious and they were not trying to do something terriblee to these children. they believed the voice was coming through to them and it was delusional. i am afraid of a lot o a lot ofd it stopped after the stories about in the '90s but then ten years later, we would hear about stories where people would be in jail and the child accused themr of rape. it's all about hope.re >> 18 at the same time like other federal abuse scandals. >> sort of a zeitgeist.
12:40 am
>> the important thing is it began its the same theme of parental love and hope. it was about believing in your kid and wanting to connect with your child and it is a sad time in the community. >> we will take a couple more questions. spayes ma'am. [inaudible]
12:41 am
[inaudible] [inaudible] little please repeat the question briefly.wi >> basically, the question is what do you do if you have an adult with autism. [inaudible]
12:42 am
that's the extra point that we are trying to engage people in the buck is to look at the past so that we can have a better future. if you look at the past, you never would have imagined that it's so awful and that it got so much better and now this next generation of families because that is who is going to fight for it are going to change the world and that they are already out there, people 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. but we really are -- we figured
12:43 am
out not perfectly, but we have moved light-years from where we were 50 years ago the question was what is going on in terms of the services in school. >> i can tell you because compared to 20 years ago w we hd services and schools in new york, public schools, a charter school. when my son was diagnosed, there was nothing.
12:44 am
i had to make a home program and i had to fight to get the services then 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're doing. we were doing. we have come so far inthe need understanding the needs of children with autism, not far enough that we are trying to support them. it's a cycle that we keep doing. >> i have a child that is the spectrum. as a parent you are always wondering [inaudible]
12:45 am
elementary school, middle scho school. at what point do you begin to see indications [inaudible] >> i watched her work this through for the 15 years we were working on this. i have seen you go from it's going to be great and realistic to where you are today.re the id >> [inaudible]
12:46 am
[inaudible] the skills that are demonstrative of being on thebuo spectrum so how does the transition from those to actually functiotwoactually fun? >> that is a great question but i don't have the answer. i'm still working on it. i felt in the early years there with all these steps i could take because people ahead of me have taken them. now that he is 21, i am okay. now what am i going to do the rest of his life, because youo don't know how much more they will continue to grow and change. there are children who do much later, 12-years-old.
12:47 am
five or six years before you hi adolescence and that changesges everything so i don't think anybody can answer your question right now. >> it's been a great conversation. >> i was just about to say one thing. wit >> i want to thank you for doing this for us. [applause] i don't know if everybody is aware of this but barnes and noble this is what they call the book fare, they donate a portion of the proceeds of everything that they're selling tonight. it's been around since it was shut down and all of the young adults cannot. cannot. they are wortthey're worth and e organization for the services
12:48 am
forsa the autistic community. they are our friends and we respect what they do a lot, so we encourage you to set up for them and by 10,000 books tonight and -- >> they started the first charter school in the country for children with autism and are now working on adult education. new york collaborates for autism. >> 2,000 books from everybody. >> thank you all very much. [applause] >> [inaudible conversations]
12:49 am
talking about their book on autism. one of the notable books of 2016. i'i am the nonfiction editor of the post. the famous person in patricia scott's a firebrand and first lady is the extraordinary eleanor roosevelt. but we already knew eleanor roosevelt was extraordinary. the great surprise in this book is the remarkable costar. murray was a black woman 26 younger than eleanor roosevelt and in 1938 in the university of
12:50 am
north carolina because of her race, eleanor roosevelt replied beginning a decade-long correspondent of friendship between the two women. patricia bell scott traces their honest sometimes contentious relationship. they got together at the white house and the roosevelt home in hyde park and new york city and eleanor admired her work her spirit and idealism but she didn't stop result results wheny pushed too hard on racial questions. murray was a brilliant woman ahead of her time who had a battle for all she achieved. she was a feminist and socialist and first in her class at howard university law school. she got a doctorate of law at yale and was the first african-american woman ordained a minister in the episcopal church. the "washington post" notables list was partial to the books

6 Views

info Stream Only

Uploaded by TV Archive on