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review Strange Son ç PDF, eBook or Kindle ePUB free ↠ [Ebook] ➢ Strange Son By Portia Iversen – Part memoir part detective story this is the powerful story of how two mothers from opposite sides of the world united in an effort to communicate with their severely autistic sons discovering breA have made remarkable progress in teaching their sons how to break through the walls of autism And in the process they have assisted scientists in making astonishing discoveries about the nature of autism itself Strange Son is the extraordinary account of two families who redefined how autism and autistic people should be treated all the while helping to answer some of autism's most baffling uestions and prompting new research Iversen weaves the twin stories of Soma and Tito and how Soma's methods mystified experts together with her own story of how she and her family came to understand Dov The result is a book suffused with uplifting human dra. The cover and title of this book are in some ways misleading This is not a personal story or a memoir though it has personal elements and is written from the author's direct experience Primarily it's a medical mystery about autism written for the layperson It's in the vein of Lorenzo's Oil; showing how the sheer dedication and perseverance some might call it obsession of average parents can simultaneously save or drastically improve the life of a child and advance the cause of scientific inuiryEven if I didn't know Portia and Dov I would still love this book; anyone interested in cognition neuroscience and psychology should enjoy this immensely It's well written the pacing is great and it's inspiring You leave the book with tremendous admiration for Portia and Soma and a sincere desire to get to know the two extraordinary sons at the heart of the story

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Part memoir part detective story this is the powerful story of how two mothers from opposite sides of the world united in an effort to communicate with their severely autistic sons discovering breakthroughs that challenged prevailing theories about autism Tito Mukhopadhyay an autistic boy from India who spends most of his time flapping his fingers in front of his eyes has an I of He favors the writings of Wordsworth and Ibsen He loves philosophy reads People and worries about conflict in the Middle East He also writes beautiful poetry That Tito can communicate at all is due to his mother Soma who single handedly developed a revolutionary method. This is a hard book to review My review is VERY long On the plus side if you read the entire thing much of which is uotes you'll never have to read the bookThere is excellent information in here about the autistic experience and stunning insights into how the autistic mind works much of it given by Tito and Soma but a lot explained by Iverson herself But it must come with a strong warningThe entire book is horribly marred by the narrow minded intolerance with which the author approaches autism and autistic people She is like a bird researcher who discovering penguins bemoans that they cannot fly and refuses to see that there is anything beautiful and valuable in them This book is compellingly written clear language tidy narrative good pacing For that reason too I want to warn autism parents away lest they get swept up and begin to sympathize with the dehumanizing viewpointI'll go over the problems first then the helpful stuff Sensitive readers may want to skip straight to the good section THE BAD I admit I came to actually hate Portia Iverson as a person To be fair she starts at a disadvantage knowing almost nothing about autism and all of it completely wrong The doctor who diagnoses Dov advises her and her husband to hold on to each other and cry Get on with your lives p 11 and with appalling advice like that I can see why she would assume autism to be a horrible thing especially since the next expert she turns to is the infamous Lovaas But her understanding never changes in spite of all her experiencesShe opens the book by saying that autism stole her son's mind despite her later discovery that his intelligence is at least normal if not high for his age Chapter 1 starts There is a small group of people in this world to whom an event so devastating has occurred that they may even have stopped believing in God Yes those people exist and they are not a small group either millions have lost homes and families or suffered war persecution torture starvation the death of a child That Iverson puts her well to do family in the same category because they have a son who isn't what they expected is sickening pathetic and hugely disrespectful not only to autistic people but also to anyone who has experienced genuine tragedyAnd by the end of the book in spite of all the information she has gathered all the insights and the incredible extent to which Tito has poured out his heart and soul to her Iverson has learned nothing as a human being She closes with a fundraising walk for the organization she started Cure Autism Now about which she writes We didn't come out for the walk to show our pride there was no upside to having autism unless you were the very highest functioning type We walked to raise money for research we walked to find treatment and a cure we walked because our children desperately needed help and because for many walking was the only thing they could do p 376 This is mind you shortly after she acknowledges that even the most profoundly autistic children can learn to communicate with the right help She notes too that at the walk she saw no alphabet boards no keyboards no voice output devices The walk raised 1 million for research It would have been better spent buying communication devices for the children who attendedMy heart bleeds for Dov the author's son whose mother can only see him as tragically broken living a life that is no way to live Dov who writes to his parents Why must you doubt everything I know p 298 The contrast with Iverson's purported openmindedness at one point she notes that she wouldn't mind at all if Dov turned out to be gay makes her intolerance all the hateful She writes that her son at age nine did things that were deeply disturbing distressing and unacceptable things that no one with an intact mind would do if only because of the sheer embarrassment of behaving that way p 111 I wish I could shake this woman and point out that there are far worse things in this world than embarrassment and that normal human beings do plenty of disgusting and despiccable and genuinely BAD things without anyone so much as batting an eyelash simply because these behaviors are so very common I also want her audience especially Tito and Dov to know that even profoundly disabled people can have self directed lives serious careers good friendships and romantic relationships People who are completely paralyzed find these things and I can hardly imagine that someone whose body doesn't obey them is any less likely to find such fulfillment Every time Iverson sympathized with Tito's bitterness about his own chances I wanted to slap her for not having the decency to know better THE GOOD So here's why I can't just recommend that every copy of this book be burned Tito Mukhopadhyay and his mother Soma offer breathtaking insights and Iverson explains them excellently I wish I could pull them all out and make a separate book free from Iverson's opinions Here's what I can uote at least Tito was revealing something no one had ever heard of thought of or even dreamed of before In fact it had nothing at all to do with what people believed about autism It had nothing to do with the absence of normal human drives like sociability empathy 'theory of mind'Tito was telling us he could not see and hear at the same time At least not when he was concentrating on somethingWithout narrowing his senses down to one channel Tito says that the world 'turns into a total chaos'What's Tito suspects that each autistic individual tends to develop one sense than the others because concentrating on one sense is a way to get better information from the environment a chance to make sense of the world p 70 71 Of course it's a stretch to say that no one had ever thought this way about autism before but certainly most people especially medical and scientific experts didn't Iverson later speculates after interviewing Temple Grandin that there are visual and auditory autistic peopleTo explain his erratic behavior Tito at about age 12 writes Portia a letter entitled Thinking of apples and doing bananasuite weird isn't itBut so it happens And it happens with me Specially when I am trying to think of something emotional and when the emotion gets too large to express While at the same time it becomes important to get it expressedSo what if it comes out as a laughter fit when the mind is filled with tearsSo what if the manifestation of the emotion comes out as running around or perhaps sniffing the closest possible objectThe important thing is to let the body lose the burden of emoton that makes it too small to hold it any further Yet Tito feels himself running around or perhaps giggling aloud fully aware that it is not what he means to do And he cannot do anything about it because he cannot stop himselfAnd what about the feeling of appreciation which was trying to come out of his mind It gets sucked drying up the senses and drying up the feelings'What use are the feelings when you do not know how to feel them'And the mind thinks another 'apple' Body does a 'banana' p 95 6 Portia of course doesn't even acknowledge what a heart felt gift and act of trust this letter is And they accuse autistic people of lacking empathy A fundamental uestion had begun to form in my mind since getting to know Tito if Tito was not retarded if he had language and could communicate if he had emotions and even emapthy then what was autismWhat remained was a constellation of out of control behaviors some repetitive some impulsive some obsessive And the inability to generate voluntary behavior p 111 Although they could rarely be understood Dov and Tito had never stopped trying to speak p 128 This is one of many profound observations Iverson makes without apparently understanding the implications regarding the intelligence and humanity of autistic people generally More interesting to note is that later tests show that Tito cannot hear his own voice while speaking and when it is amplified and piped back to him he is amazed and embarrassed by his poor enunciation This should be the basis for entirely new speech therapy methods for autistic children I considered this for a moment We all have unconscious or barely conscious behaviors that we engage in like twirling hair biting nails or tapping a foot Was Tito's entire behavioral repertoire like that The thought frightened meTito went on to explain a further subdivision of his unconscious behaviors He called these constant happenings and instant happenings Constant happenings were the unconscious behaviors he engaged in most of the time to manage his sensory experience These were the repetitive behaviors we called stimming the rocking and flapping he used to regulate his erratic nervous system And then there were the instant happenings; these were the sudden impulsive behaviors which also took place at the edge of awareness These instant happenings could be as simple as grabbing food off someone's plate or as explosive as strangling his mother Tito explained that he was powerless to stop these instant happenings And somewhere entirely apart from these two calamitous states lived the sensitive mind of a young poet p 128 9Tito could not anticipate he could not wait he could not pace himself he did not know how to live in the measured flow of time defined by predictable events and expectations the way most people can This caused him untold anxiety and at times pure raw uncontrollable fear and rageConseuently Soma often avoided telling Tito what was going to happen next This established an unfortunate cycle in which the less Tito know what was going to happen the his anxiety and sense of uncertainty grew Yet any future event of which he was informed be it in one hour or in a year seemed to arrive with the full urgency of the here and now This drove Tito crazy If Soma told him that his father was coming for a visit Tito would become obsessed with waiting for him and knowing moment to moment exactly how many weeks days hours and minutes remained until his arrival This obsession would occur to the extent that it interfered with every other aspect of Tito's life And the anxiety would grow over the weeks and days until it finally exploded in a violent outburst p 144Another excert from Tito's remarkable poetryMen and women are puzzled by everything I doDoctors use different terminologies to describe meI just wonderThe thoughts are bigger than I can expressEvery move that I make shows how trapped I feelUnder the continuous flow of happeningsThe effect of a cause becomes the cause of another effectit is a world full of improbabilitiesRacing toward uncertainty p 144 5A profound observations Now I realized they were not going to be testing what Tito had reported at all I was beginning to suspect though I hoped it was not true that scientists might just be using Tito to try to prove their own ideas not to investigate what Tito was telling us about what it is really like to be autistic p 166 Imagine your mind thinks creates ideas and thoughts You forge a tiny pathway to the outer world to express them but you need someone else to initiate the use of this pathway And when the person does initiate for you they must constantly prompt you along and keep you in your chair long enough to write out what is in your mind Even then having succeeded in getting it out you can't access your own words by reading them yourself or by speaking them p 178 8 For Tito the experience of emotion seems to have lagged far behind his cognitive development remaining raw and immediate urgent and overwhelming and completely unmodulated No one as far as I know had ever described this before that autistics could have empthy and theory of mind the ability to know what another person is thinking or feeling and understand the own emotions and the emotions of others cognitively but not be able to filter modulate or tolerate the direct experience of emotion itself The idea made sense when one considered Tito's other perceptual abnormalities and lack of modulation and integration across his sensory systems p 182 3 This difficulty with filtering both internal and external sensations is now widely accepted as the intense world theory of autism Tito reported that it was much harder for him to comprehend what was written by any method other than listening He explained that this was because the struggle to read aloud or silently demanded so much effort that it was extremely distracting and diminished the attention he could focus on understanding the text'How can a mind that is literate and a body that is capable of physical movement not work together well enough to be able to read unassisted' I wondered p 186 Note that autistic people who prefer visual input often experience a similar struggle when trying to understand spoken language as opposed to the written word flapping his hands was an instant physical sensation that calmed Tito's scattered senses and his anxiety Writing was calming too but it was not an instant fix Writing depended on a complex and precarious seuence of events it depended on having thoughts that could be easily disrupted by the environment and writing itself depended on someone handing him a tablet of paper and a pencil and prompting him All these things were entirely out of his control Hand flapping and rocking were the most accessible rapid and reliable means Tito had to regain a sense of his body when he was anxious which in turn calmed him down I thought about all the hours of therapy Dov had undergone in an attempt to make him stop stimming I had always wondered why Dov was so driven by those repetitive strange stereotyped movements p 193 I have to be bitter again here and note that this is the closest Iverson comes to expressing remorse for all those hours of hurtful therapyA later GSR study reveals in autistic kids Their arousal was racing between extremes that most people rarely experience And these peaks were occurring about twice as freuently p 336 The human brain actually does process images in the very components Tito described namely color shape size and so on but we are unaware of these separate elements that our brains seemlessly combine into a smooth whole incorporating all the elements Tito it seemed was actually seeing these individual visual elements and then having to fit them together into a mental picture What a trememdous amount of work to see a simple doorAt another time he said that he 'took a snapshot' and ran out of the room to study it and that was why he jumped up and ran out so oftenThe important point was that he never got the parts and the whole picture together at the same time p 238 9 When he was very young something thing 'went together' that shouldn't If he saw a cloud and heard the word 'banana' they might go together from then on and he couldn't get them apart This overassociation between images and words made it so that Tito could not understand or identify things in the environment He couldn't make sense of the world around him He didn't realize that voices and people went together when he was very young and he couldn't understnd why the voices stopped when people left the room p 240Was the delay Tito experiences between hearing and seeing caused by years of listening but not looking Had Tito inadvertently trained his sense to operate separately to lessen the 'chaos' p 241One of the first and most astonishing things Tito had ever told me was that he couldn't feel his body p 243Neurologist Bruce Miller says apraxia was the failure of a circuit involving the frontal opercular and parietal areas of the brain The opercular area was a component of Broca's area the part of the brain involved in speech People with opercular damage could write better than they could speak p 245'So you start to say word one but then you start to think about word two and word one is gone' John Houde clarified 'Exactly' wrote Tito p 255I knew it was hard for people to keep reminding themselves that regardless of his overt behavior Tito had a fully present mind Perhaps if a person acted as oblivious to others as Tito did it was counterintuitive to think that they were aware of the reactions of others p 260 I admit to struggling with this myself still And so does almost every researcher who meets Tito You'd hope that scientists would be less likely to judge things purely on surface appearance but people seem remarkable bad at giving one another the benefit of the doubt Even though Dov had picked up an amazing amount of information by listening and through sheer exposure there was a lot he hadn't been exposed to his academic education had been largely confined to the hour or so a day he'd spent listening to his sister do her homework in his room All the while at school he was being taught at the pre academic level I could hardly bear to think of the endless hours he's spent failing at tasks we count not do like counting from one to ten by manipulating colored cubes when he already knew basic arithmetic In fact this was the sort of activity he had been engaged in all day every day his whole lifeI now saw Dov in another new light instead of seeing him as uncooperative or uninterested I saw him as infinitely patient never giving up p 311In the back of my mind a frightening thought was taking shape a perfectly logical thought that I had been surpressing because it was so huge and so terrible If Soma's method did work with other autistic children then the unthinkable was probably true it was likely that there were many of these so called lower functioning autistic children and adults who possessed an intact mind but had absolutely no way to let anyone know about it p 317 You had to look at how the child stims Soma said observe the pace of it And you had to go faster The autistic child is constantly distracted so you had to become the biggest distractor of all'You have to become the stim Soma declaredAnd in polar opposition to everyone else who worked with autistic children Soma completely ignored behavior In fact she never referred to it at all I noticed she always allowed Dov to hold his favorite beads or whatever else he had been stimming with in his left hand while she worked with himSoma never pressured Dov to perform Instead she intensely urged and prompted all the while encouraging and reassuring him She never used a reward system Instead she proclaimed that the accomplishment itself nd being recognized as intelligent were the autistic child's greatest rewards p 325Only two months later by Christmas all nine children in the class were starting to point with Soma Every child could do some level of academics and all of them were demonstrating cognitive abilities far beyond what anyone had ever suspected they were capable of p 358 If only these past few uotes had been the central point of the entire book

Portia Iversen ½ 5 review

Strange SonOf teaching him in their one room apartment in Bangalore a classroom that lacked even running water Portia Iversen an Emmy winning art director whose life was turned upside down when her own son Dov was diagnosed with autism heard of Soma's miraculous story in the course of her own desperate search for a cure Under the auspices of Cure Autism Now the foundation she started with her husband that is now one of the largest funds for autism research in the world Portia brought Soma and Tito to America to help researchers understand how Soma accomplished this amazing feat and to determine what can be learned from their success Together Soma and Porti. This is a complicated book to review because I have so many conflicting feelings about it It is absolutely a must read however for understanding autism You can learn in just this book that anywhere else Iversen the mother of an autistic son starts the foundation Cure Autism Now now merged with Autism Speaks with her husband She writes about her most important endeavor that of bringing over Tito Mukhopadhyay and his mother Soma from India Tito is labeled as severely autistic non verbal and with a lot of self stimulating and uncontrollable behaviors He has however learned a means of communication and is a published poet His mother Soma was able to teach Tito to point to letters on an alphabet chart and to write himself She is now a teacher of what is called the rapid prompting method and her techniue has worked on other children including Iversen's son The book then is a fascinating glimpse into autism itself Tito is not by any means recovered so he is often able to relate what it feels like to be autistic He writes that hand flapping is a way of feeling his body He has very little body awareness and hand flapping is a way of making sure he is still there Interesting Iversen talks about early ABA methods when they would shock students out of certain behaviors Despite shocking they could not make autistics stop hand flapping Most animals the scientists knew would stop certain behavior if shocked enough including to their own detriment such as not eating So hand flapping is essential behavior to autistics Tito also articulates the fact that much of his behavior remains beyond his control He is an interesting contrast to Temple Grandin whom Iversen talks to about Tito While Temple relies heavily on her visual sense and processing Tito is almost unable to use this sense at all and relies on his auditory sense In fact Tito relates that he can only use one sense at a time and if he is listening to something he is unable to make eye contact or notice anything visually It really is a fascinating glimpse into the autistic mind Soma is able to teach the method to Iversen's son and they are able to see that he has learned much than they knew One of the interesting things that they learn is that the communication is not always easy With both boys communication is still not like it is with 'typical' peers Communication alone is not a bridge to a so called 'typical' boy trapped with no communication Some things cannot be answered Even easy uestions such as what they want for breakfast But other things can be expressed with such depth and loveliness that it is astonishing Fascinating read I did not give it five stars because I did not care for the author much or for the way that the book was written She admits that she does not spend much time with her autistic son because she doesn't know how to be with him It seems that her other children have also suffered from neglect in her obsession with autism While I can sympathize as a mother dealing with autism myself I just found her a bit cold Also in her treatment of Soma who seemed to desire a closer relationship with the author While I understand that this might be difficult being from two different cultures was it necessary to recount this in the story as well as the author's rejection of her It was a bit weird and ruined for me what was an absolutely fascinating look into an amazing group of people