Skip to main content

tv   Book Discussion on In a Different Key  CSPAN  March 23, 2016 10:11pm-10:57pm EDT

10:11 pm
and on those days instead of the ce boffiause i promised them i will be a very poor influence on those days and they really don't want me around. i would also suggest that you have routine, routine seems to be very helpful for people with depression and manic depression including exercise. i guess in the political era i would tell you to work for progressives. because they tend to be just a little more open minded about these things than others. i will turn it over to doctor to have the last word. >> i just add to that, just go get good treatment. these are manageable illnesses. you people with susceptibilities to different conditions weathers cardiovascular, co- lead -- colitis, and others and they are
10:12 pm
managed. the example that i give his aides. from the late 70s when the first case of aids and people were getting these infections and you cannot culture the organism and could not find out the cause. they invariably died. was very highly stigmatized. but it's happening people who were gay or drug users. but the advocacy was so telling and so effective that money was poured into research and by 1984 that virus was isolated and in 1987 the first treatment was introduced.
10:13 pm
so a man who was diagnosed with aids he was dead within a year, in 1991 magic johnson was diagnosed with aids, and i saw him the other day. he is leading day. he is leading a pretty normal life with treatment. so it is simply a matter of getting good treatment. the last thing i say is this variation of quality of care everywhere, it's more varied than in psychiatric care just because the field is well developed. you need to find good treatments and if you do that i think you should be able to help measurably and hopefully be able to lead as good of life as you would have without it. >> with that. we'll say thank you to the
10:14 pm
dr. for his booking for his wise words. [applause]. >> so just to remind everybody, a special thank you to jeff and bob. i really great conversation to remind everybody we are set up outside, you can get your book signed. i'm sure they would love to sign your book. also there are refreshments outside as well. please move to the area where you came in and will continue the conversation. thank you so much and let's continue. [inaudible conversation]
10:15 pm
>> tomorrow and c-span two, a look at the relationship between the federal government and the states, including discussions about drug abuse, veterans, and state government finances. live coverage of the national lieutenant governors association begins at 9:00 a.m. eastern here on c-span2. >> book tv has 48 hours of nonfiction books and authors every weekend. here are some programs to watch. this weekend, join us for the 22nd annual virginia festival of books in charlottesville. starting saturday at noon eastern. programs include author bruce hillman who discusses his book, the man who stalked einstein. how nancy scientist change the course of history. then saturday evening at 7:00 p.m., patricia bell scott, professor a matter of women's studies at the university of georgia, on her book, the firebrand firebrand in the first lady. portrait of a friendship. the book explores the relationship between civil rights activist polly murray, cofounder of the national organization of women and first
10:16 pm
lady eleanor roosevelt. patricia patricia bell scott speaks with author and historian at roosevelt house in new york city. on sunday beginning at 1:00 p.m. eastern, more from the virginia festival a book. including kelly karlin, kelly carlin, george carlin's daughter who talks about her life growing up with a comedian come in her book a carlin home companion. on sunday night at nine p.m., afterwards with historian nancy cohen. author of breakthrough, of breakthrough, the making of america's first woman president. ms. cohen looks at women political leaders and the advances they are making in the political arena. she is interviewed -- >> for a woman to be at the head of the most powerful country in the world, when one of our key allies does not allow women to drive, our most significant enemy at this time, isis, is literally executing women and
10:17 pm
girls simply for being women and girls. i think that sends a powerful message from the bully pulpit about what america stands for. >> go to for the complete we can schedule. >> john donovan and karen zucker are the authors of in a different key, a book about autism. they talk about how autism is diagnosed and treated in a conversation with bloomberg news managing editor, he editor, he thin. this is 45 minutes. >> sean, thank you and welcome everybody. it is a great book. i feel bad that you have my back over there, so how about this. it's a very moving book and what's great about it there so
10:18 pm
many individuals against the system stuff which is very moving and very real. so the stories and social history, it is really a great read. so congratulations. i guess, you know there are a lot of things about the book that really did fascinate me and move me. why don't why don't we start where you start at which is how you both got interested in it and what led you to it and a little bit about your relationship, not your relationship together but about abc and how this became a big story story for you? >> about 21 years ago ago i had a son with autism. not long after that i figured out i needed to do something to try to help society and me understand it better. i i asked john to help me and we were term
10:19 pm
team of journalists working together. >> you mean you saw your kid is a story right away? >> no, actually the truth of the matter is is that john saw my son is a story right away. and he said, we're doing this very intensive program, 40 hours per week, 25 hours in in the chair, four hours of speech, we were really going to beat this because we thought it was beatable. for some people, it is. so is really a day in mickey's life was really intense it would've been great television. so john said let's do a day and the life of mickey and i said no. and he said yes and i said as long as i am not in it. you really can't to a story about a mother and the sun if she is not in it. so we decided instead to do a story on the treatment that he was receiving at the time. and show that it did not help all children, but it did help some and the whole idea was what
10:20 pm
is one word for it. we we got abc news, not the main abc news, but "nightline", because nobody really was talking about autism is 2000. >> people really didn't know what we're talking about we brought it to the editors. they have may be seen rain man and had a sense that they heard of it but not a sense that it was really going to be a story or relevant it to a broad audience. >> that surprises me a little bit because struggling a medical stories and health are such an enormous part of the american narrative. i'm surprised people were not interested. >> there are a lot of stories that come along and we are pitch them all is the time by families who are dealing with one or another issue like that. we work all the time. autism have that sort a profile. the inside track was that zucker was inside abc and pushing and pushing until "nightline" said yes to it. >> and then how did -- the
10:21 pm
latest, the book i think it begins with this man don triplett who was the first person diagnosed with autism. tell us about him and how you got to find him and develop that? >> long story short, we, we started to do a series called-of autism. sometime along the way we needed to do something more everlasting and really dig into the history of autism. in doing that digging, wont you tell. >> we learned sort of it through the grapevine that the first person ever diagnosed with autism was not diagnosed until 1943. it is that recent. that person we learn through the grapevine was still living somewhere in the united states, these many years later.
10:22 pm
by looking for clues in the reports that were written about him in the 1930s and forties, we found out what town he was living inches there is a little town of mississippi, we, we knew his first name was donald but in the literature they only gave the initial of his last name which was tv. so karen who was a superb investigative investigative reporter but also knows how to dial a telephone. >> we did that, we dial dial telephone. >> she started going through the teeth in this town. and you hit paydirt one day. >> so a number of donald's, but not many in force, mississippi. then one day i called and i got an answer machine. the machine picks up and says, hello, and i hope you're having a happy spring and you should have a happy fall two and a happy christmas. have a wonderful 2007. i hung up the phone and i said we got it. it's him, i know tim's. >> this is our guy.
10:23 pm
>> and it was. there is no doubt. >> so the story of donald t, he was a very severely limited in his ability to communicate in his ability to communicate with people. his parents paid him no attention, given a toy he would spin it and not use it in a way it was supposed to be used. his language echolalic. if you said something to him, rather than answer he would repeat the question over and over again. that is a rather classic sign in some people of autism. then you go for her to the day when we got to know donald. the story was astounding. we got down there, karen will tell you in a minute out we got a little resistance from the community and trying to find a story. we met a man who was in his 70s was speaking, driving a
10:24 pm
cadillac, playing golf, traveling around the world, who had friends and lived independently on his own, who still definitely had autism. but he had grown, matured and flourished. we think that is because of him and his inherent potential but we also think it was because what happened to him in that little town. >> that town embraced donald. now you can also say donald came from a wealthy family. his mother owned a bank, his family's mother on the bank. he was well respected because he was a banker's son. >> if you wanted to get a mortgage you did not mess with the triplett kid. >> so it is not just simply that life is marked complicated like that. donald had sort of although perfect elements happening. part of that was he had a family that was respected in the community. because they were respected,
10:25 pm
they respected donald and they embraced him. they embraced him so much that when we came down the first time to do the story, we are told by people coming they literally lectured us, if we messed with donald, they would come track us down and find us and get us. because nobody messed with donald in the community. people supported him. >> what happened as he grew up, as he grew up, as this sort of idea about donald took hold, he began, his mother mother used his influence to get him where his was not wanted. she used her pole to get them in the public school, she used her pole to get him space on a nearby farm where he spent a few years been able to wander freely and to have structure in his life. to work with the farm chores. donald ended up getting into high school, by that time you see a flourishing personality. he was about three years behind everybody else in his class. but the kids, you would expect
10:26 pm
him to be bully and teased which is by the way the experience of a lot of people who have autism today who are in the public schools. we talked to people from donald's era who were in their 70s and 80s and they thought he was kind of a genius. everywhere we went in time we asked about what they knew about him and they said he was like the smartest kid in the school. he had that weird mathematical thing. he he had an affinity for number. >> it back there is a story of him counting all the bricks of the entire school. >> to or were not sure. >> actually was really great is this was all legend of the town. >> donald was once asked and said we hear you count past the homily bricks on the side of the school building there. >> 4362, but i'm making that up. and he tossed out a number they all believed him. >> they said wow, and they ran off and told his friends in the story is still alive 50 years
10:27 pm
later. nobody actually really counted the bricks. >> or asked him about it until we did. we said, so tell us the brick story. he told us that he had not counted them that day. he just wanted them to like him. >> and it worked. they really admired him. >> there is a fantastic story about donald and the way the community embraced him and the way in which his potential was realized in an amazing passion. i'm assuming assuming you began there, but the things that to me are most stunning about the book and that is a very beautiful story, is the history of the way mothers and parents were taught to think about children who we think of today as having autism. that word was not always there, but when but when it was, talk a little bit about this because the notion that somehow it is
10:28 pm
your fault that if you're the parent. or that you institutionalize a move on, the history you found, assuming you did not know before you started. >> their sketches here and there. an interesting thing was that the history had not been written in many cases. we ended up piecing fragments of things here and there. interviews, scattered medical writings, and even old videotapes, radio recordings, maps and all things but one thing that was fairly well-established was this refrigerator mother theory. until about 1970 or so, between 1943 in 1970, when i mom took her child with autism to inexpert is that what is going on with my child? the answer was well, you did this to your child by failing to love the child enough. karen has met some of these
10:29 pm
mothers who experience this who today are in their 80s, some in new york in fact, you spent hours with them. i'll stop talking because it's your area, the part that impressed me as it took hours because the shame was still there. even though they did not believe it longer. >> a lot of the history of autism is very dark. if you are if you are mother this is one of those stories that are just heartbreaking. you are already living this life and doing what you can to help this child who is so different and sometimes so complicated, and sometimes so disabled. now you are being blamed for it. one of the mothers i met, her name was leah and it took her a while to even get a diagnosis. once she got got the diagnosis she tried to find a place for him to get some kind of treatment. some treatment was in a new york hospital, some -- the deal was
10:30 pm
the only way you could get your son into a program or more rarely your daughter was if you got there. you needed to be cycle analyzed and to discuss what you did to cause autism. rita was an educated woman and who had knows a lot about psychology, had read the book and she knew, this is my fault. so i have to figure out what to do. one day she is sitting in with a session with a psychologist. she tells tells a story after almost three hours of talking, she had not told the stories for years, decades and she tells a story to me were she says i'm sitting there and all of a sudden i realize what happened. i got it. it was me, i remember. i thought he looked like a chicken. he was jaundiced, he was yellow, his hair standing up, and i thought my head, he's like a
10:31 pm
little chicken. and i cost his autism >> >> with everything else in your life devote your time to this child for his or her potential see you are told
10:32 pm
to go forward and digest the whole question of parity today in the responsibility we have is explained in the book. we live in the world where the story britain's that has been created in the '50s and '60s and '70s sandy's by parents decided to stand up and that attitude had other manifestations it was so powerful that parents were told routinely to send their kids to institutions to hide down and put them away and tried to move from a and direct activities to the normal kids. >> nizolek parents like all of us that is what society
10:33 pm
said to do. >> dr. spock said that. page 549 of the first edition a recommendation and if the child was zesty developmental disabilities that is visible the child should be removed immediately from the parent's control and put into an institution. have this conversation with a father because the mother will try to fight it. but many the parents did send their children to institutions not because they couldn't handle the burden but the pressure and the shame plus so intense. >> but is some cases they couldn't. >> that is true but because seib would be so difficult to manage but there is a solution.
10:34 pm
>> where did you send your child? to the school system legally said we don't want you here. 1977 legislation was finally passed with the federal government said if you want our money you can never turn away a child you find a solution. >> that came from a political movement civic entirely led by parents the history of autism and so many ways is a just about autism that any parent what would you do for your child? there is nothing we wouldn't do. that is why we are where we are today. >> but has said child i remember it was mr. child
10:35 pm
psychology and has been discredited today. >> if you don't know who he was he was dr. phil of his day except all about psychology and psychiatry giving advice on television television, movies and magazines to parents how to raise kids becky had an academic appointment to the university of chicago. >> and the but it turns out it turns out his doctorate was an art history and he convince the university of chicago president he was a psychologist whose psychiatrist and given charge of a school that was of bdm back of for those miracles he was pretty about supposedly with the treatment of children with autism and almost ridiculous
10:36 pm
for a new way he writes a book where the theme is repeatedly tested the mothers did this with children did this and was obsessed with the weather but they're often obsessed whether trade schedules this girl was obsessed with the weather and he actually wrote, here's what was really going space if you'll get the word whether and breaking up it says we ate her and the girl was terrified to be devoured by her mother while she was obsess with the weather. when that came out in 67 the praise for him was astounding from the deere
10:37 pm
times or the new republic he was seized that everybody bought into the emperor's new clothes. but that the perception was astounding. that is what mothers were up against tuesday it was them. >> so with this idea of the scientific establishment was just so wrong and everyone took it seriously and to dave plenty assume they are wrong about everything else also. i is meyer while you tell the story you know, , out with that argument and it seems to be quite helpful to understand on to some. >> there was very little science done. to families independent of
10:38 pm
another study the science. they will study if there is no money. they bring in the entire field of scientist. data we have come so far in an understated the the nuances. >> how little that we do know is we are talking about a disease there are no medical indicators. so with those traits. >> it has been a moving target but those definitions of the textbooks have been changed and revised in hand
10:39 pm
truncated end that has many repercussions. the rate of optimism was 4.5 her 10,000 now we found out where the number comes from. even the experts are not sure. it comes from a 1966 study. and as a relatively junior researcher to come up with a statistic to find out how much they should deliver. and got a list of all those that were diagnosed to send out questionnaires.
10:40 pm
and he then went with his research assistant one house ad of a time. to count how many children had autism but when he went to to the textbook to say here is the definition there was none. there were all kinds of conflicting discussions from what it was called. and coming up 60 people. and then the really amazing thing i can say all have optimism so he drew a line halfway down the list to say those above have gotten some in those below don't. he was very honest by the way.
10:41 pm
and he said how arbitrary it was then the line was arbitrary. that statistic of 4.5 out of 10,000 so that is the baseline. i don't believe understanding this doesn't make sense until we have a definition. >> every autistic child grow up to beat him? >> that is a dream. but we tell this story towards the end of the book to some extent there is a
10:42 pm
young man with autism and he didn't tag of language he began flipping his fingers in front of his pace -- his face. in the said what is with you? >> he has autism what is wrong with you? what is your problem? get off his back. >> they lined up behind the kid. >> it is the essence of what we need to do oho as a society. and the bully needs to get off the bus. >> it isn't just a metaphor.
10:43 pm
>> we will stop our conversation into questions. >> [inaudible] >> if i would summarize for
10:44 pm
to put people together who have complementary skills to make a good team. people are beginning to recognize individuals with autism if there at that part of the spectrum that's that spectrum can work there is a man in denmark to we profiled recently called a specialist in started a company to prove that individuals with autistic traits have economic value. that sounds cold hearted but he started this company where he hires almost
10:45 pm
exclusively people with autism and uses their talents to understand patterns and a detail and he knows they don't do very well at job interviews. >> he is trying to spread in this country he is all over europe. >> you missed my cue. [laughter] so instead of sitting down where people have eye contact he gives them lego assignments and create a robot. so with is a room with a big sandbox. that is the job interview. >>
10:46 pm
[inaudible] >> within the spectrum are severely disabled and struggle from talking to binging their head against the wall to do anything wildly independent. and those with the social skills because they cannot figure out how to have a job. they keep changing the definition of what to some but within the spectrum we find a different types of people. right now the spectrum is so
10:47 pm
huge. >> but the positives if you can get that diagnosis to put it on the agenda it has real meaning. >> [inaudible]
10:48 pm
>> those that are the two guys traveling around the world in communicate through typing. in those who cannot find ways to communicate there is no question today you can go to schools with revolutionary development for children who cannot communicate verbally be you can see them working with basic grammar from the system in place for betty years called the picture exchange communication system. in to take things backed
10:49 pm
that was part of it on its own. if you go back to the '60s all womaned hardest the initiative of walking typewriter. so the attempt to get to people to speak has been there. because suddenly the language that emerges were denied education. suddenly they were producing incredibly eloquent language there was a scandal for the process called facilitated communication. >> we tell that story in our book.
10:50 pm
>> it is a shocking story. tel that quickly. >> that teacher who said she was facilitating her father and brother were raping and abusing her. she would sit in front of a of a table with a keyboard is she might wander and was found when the facilitator supported that hand the child independent was steady and began to tie up coherent language may be roughly in the beginning the better with practice and it was understood that the language was coming from the child and out of it came
10:51 pm
astounding language and to the media went to nuts. "the new york times", that television show did major stories for these children and adults. and then all of a sudden the messages that began to emerge were my father touched me my father raped me. assertions of sexual abuse were taking place. the fathers sometimes the mothers are siblings were arrested and held on charges of sexual assaults and abuse. based on the testimony this
10:52 pm
is when it got a real test because the defense attorneys got involved. >> a lawyer broad inexpert to steadies' communication between people who have bought his them with the simple plan to test the fit was real on one side they would see a picture the decide the facilitator would see a picture. and the person she was typing for had the same answer that we would know they were communicating in every single instance when a person with optimism saw a photo the facilitator saw something else they did not
10:53 pm
put the same thing. >> i want to back up just a little bit because i do think the facilitators were not trying to do something awful they believed it was coming through them but they were delusional. claman afraid there is a lot of that but it stopped with the stories got out but 10 years later we would hear stories that people were in jail because they were accused of rape. >> it cavemen at the same time no -- it was no coincidence. >> a lot of the facilitators were dedicated teachers they
10:54 pm
wanted to protect them. >> but it is the same theme of parental love and hope and what can we do to help our child? it was about be leaving in your kid and connect with your child. >> we will take a couple more questions. >> ha. [inaudible]
10:55 pm
>> can you repeat the question? >> basically what do you if you have an adult with what is the man who pays for that? and that is the point.
10:56 pm
and that is part of the point we try to engage people. to have a better future. you cannot imagine if it was so awful. now the next generation of families to change the world. and people who are here today in trying to change the world to provide services in homes for people that don't have them but we


info Stream Only

Uploaded by TV Archive on