on June 10, 2014
[Note: Copied from my review on goodreads. Quotes are from an ARC]
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 quotes), you'll never have to read the book.
There 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 warning.
The 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 viewpoint.
I'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 experiences.
She 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: <i>"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."</i>
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 tragedy.
And 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:
<i>"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." </i>(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 attended.
My 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 more hateful. She writes that her son, at age nine, <i>"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" </i>(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 quote, at least:
<i>"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 something.
"Without narrowing his senses down to one channel, Tito says that the world /'turns into a total chaos.'/
"What's more, Tito suspects that each autistic individual tends to develop one sense more than the others-- because concentrating on one sense is a way to get better information from the environment-- a chance to make more sense of the world."</i> 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 people).
To explain his erratic behavior, Tito (at about age 12) writes Portia a letter entitled "Thinking of apples and doing bananas."
<blockquote>"Quite weird isn't it?
But 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 expressed.
So what if it comes out as a laughter-fit when the mind is filled with tears?
So what if the manifestation of the emotion comes out as running around or perhaps sniffing the closest possible object?
The 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 himself...
And 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</blockquote> (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!!).
<i>"A fundamental question 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 autism/?
"What remained was a constellation of out-of-control behaviors, some repetitive, some impulsive, some obsessive. And the inability to generate voluntary behavior."</i> p 111
<i>"Although they could rarely be understood, Dov and Tito had never stopped trying to speak."</i> 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>"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 me.
"Tito 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."</i> p 128-9
"Tito 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 rage.
"Consequently, 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 more 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 more 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"</i> p 144
Another excert from Tito's remarkable poetry:
<blockquote>Men and women are puzzled by everything I do
Doctors use different terminologies to describe me
I just wonder
The thoughts are bigger than I can express
Every move that I make shows how trapped I feel
Under the continuous flow of happenings
The effect of a cause becomes the cause of another effect
...it is a world full of improbabilities
Racing toward uncertainty.</blockquote> p 144-5
A profound observations: <i>"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." </i> p 182-3 (This difficulty with filtering both internal and external sensations is now more widely accepted as the "intense world" theory of autism).
<i>"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"</i> 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.)
<i>"...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 more complex and precarious sequence 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."</i> 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 "therapy").
A 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 frequently..." p 336
<i>"It seemed as if Tito was perceiving a fragmented visual picture. 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 door!...
...[At 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 often....
...The important point was that he never got the parts and the whole picture together, at the same time."</i> p 238-9
<i>"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 240
"Was 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 241
"One of the first and most astonishing things Tito had ever told me was that he couldn't feel his body." p 243
"[Neurologist 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 255
"Perhaps Tito was more correct in his assumptions than I'd given him credit for. I thought John Houde realized that Tito heard and understood everything that was going on around him. Yet I 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."</i> 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.)
<i><b>"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 life.
"I 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 311
"In 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 more 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
<i>"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 declared.
"And 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 him.
"Soma 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 325
"Only 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
</b></i> If only these past few quotes had been the central point of the entire book!