Friday, March 02, 2007

More reading and thinking: Strange Son

If you've been watching my sidebar, then you know that I've been reading Portia Iversen's Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism for weeks. My husband says that my slow progress through the book tells him all he needs to know about what I think of it.

But it's just not that simple.

Last week, as I was reading, I did a lot of thinking about thinking, and especially about what and who makes me think. I realized that I'm usually drawn to like-minded writers - to those who make me think more about things I already think.

But I also recognize that sometimes my best learning - by best thinking - comes as a result of reading things written by people who think very differently from me. Sometimes those different-thinking writers help me appreciate perspectives I'd not considered before, and alter my own perspective; sometimes they make me better able to articulate why I'll continue to think what I've been thinking all along.

That's the spirit with which I tried to approach Strange Son, because it became clear to me almost from the outset of the book that Iversen and I differ in our approaches to parenting a child with autism. As I read, I reminded myself that our boys are very different from each other: Iversen's son Dov is almost entirely nonverbal, and for many years Iversen felt unable to reach him. I reminded myself that Iversen's life, experiences, and parenting journey were undoubtedly different from mine, and that I could not possibly know for certain what I would have done - what my choices would have been - what approaches I might have tried - had Bud been less like Bud and more like Dov.

I could not possibly know.

And yet, I could think.

And what I think is this: I think that no matter who Bud had been when I met him - whether he'd been nonverbal or deaf, whether he'd had seizures or been hyperactive, whether had he been unresponsive or typically developing - no matter who he'd been, I think that at any point at which I felt like I couldn't understand him - at any point at which his behavior seemed frightening - at any point at which I felt out of my element - my first instinct would have been to spend more time trying to engage with him, trying to understand him, and trying to let him know I was there - for him, and with him.

Unlike Dov, Bud is verbal and visibly engaged with the world, but I think - I believe, though I can't know - that if he wasn't, I would have had the same philosophy. If Bud spent his days staring past me, not responding, watching dust mites in a sunbeam, I believe that - for a while, anyway - you'd find me sitting next to him, feeling the warmth he felt, watching the patterns he saw, and thinking: how can we use this? what can we do next? what can we do here together?

Iversen took a different approach, and in the first half of Strange Son she outlines the journey she took in the years immediately following Dov's diagnosis, as she invested herself fully into learning about the science of autism - the biology, the neurology, the genetics - and into raising money and recruiting researchers. Together with her husband she founded the Cure Autism Now foundation, sponsoring research, fundraising efforts, and national conferences. With the financial support of CAN, she brought Tito Mukhopadhyay, a young man "nonverbal and severely affected by autism" and his mother Soma to the United States from their home in India. Under Soma's direction, and despite his "rocking and flapping and staring ahead as if he (didn't hear) at all," (p. 49) Tito learned to communicate by pointing to letters on an alphabet board, revealing his IQ of 185 and his talent for writing poetry. Iversen lobbied researchers and scientists in the U.S. to raise awareness of Tito and Soma, and to promote research that might make this kind of communication possible for other people with autism.

Iversen's efforts were exhaustive, focused, and intense. She devoted every bit of her time and energy to her work with autism - to the work she did on Dov's behalf. But throughout most of Strange Son, it remained unclear to me how much of the work she did was actually with Dov. Dov remained a stranger to me for most of the beginning chapters of the book. Iversen's love for him is palpable; but, so too is her sadness, frustration, and fear. As I read, I got an increasing sense that, despite the long hours and hard work she put into studying, lobbying, and networking around autism, she regarded spending time with Dov just too difficult a task.

In the second half of Strange Son, Dov became a larger presence, as Iversen recounted Soma Mukhopadhyay's work with him, teaching him to use an alphabet board the same way she'd taught Tito. In a short time under Soma's tutelage, Dov was using the board and Iversen discovered through Dov's own words that he had been able to read for years, that he understood everything he heard, that he'd been paying attention to news reports on NPR, and that he was a smart, engaged boy.

I would have imagined that this would read like a moment of triumph - this unveiling of the "real" Dov - this moment in which mother and son could finally connect. And yet, it was one of the most heartbreaking moments in the book, as Iversen realized that her nine-year-old was a stranger to her. She writes, "After all these years, I had a thousand questions to ask him and a million things I wanted to tell him. And yet, I couldn't think of what to say. 'I love you,' I blurted out. My words hung strangely hollow in the interior of the car." (p. 291)

I imagined that the rest of the book would lead to a denouement of lessons learned: the importance of recognizing your child's own unique talents and gifts, the need to savor every moment that you have with your child, the importance of connection. But the lessons never came, and Iversen remained a stranger to me.

As a result, the more I read, the less inclined I was to keep reading. The science that Iversen presented was thought-provoking. Her description of scientific studies about the arousal states of children with autism was fascinating. Tito and Soma's story was interesting. But it was Dov whom I longed to know.

So I kept reading - until, toward the end of the book, Iversen described a presentation by Dov at a CAN annual scientific meeting. He was scheduled to appear with Soma in front of a room full of people to give a demonstration of how he used the alphabet board to communicate. When the presentation began, Dov seemed anxious and tense and pointed out the word "rock." Soma pushed him to name three types of rocks, and his anxiety and anger grew as he growled, pinched, and head-butted Soma, but ultimately typed the words igneous, sedimentary, and metamorphic.

It was an extraordinary achievement, especially given the conditions under which Dov was asked to perform. And yet, Iversen describes her reaction this way:

"I was relieved when it was over and Soma and Dov joined Erika and Tito and they left the room. I rationalized to myself that at least this was a demonstration of how even such an out-of-control, behavioral wreck of a person could still be intelligent." (p. 352)

An "out-of-control, behavioral wreck of a person."

Her son.

I put the book down, and thought perhaps I was done with it.

A few days later, I returned to it. Perhaps, I thought, the next page would reveal her regret, her learning, and her determination to do better next time.

Instead, I read this:

"The room was emptying out for the morning break when Gino came over to me.
'I found this under the camera tripod,' he said, handing me a rock. 'I think Dov
dropped it on his way up to the stage.' I turned the rock over in my hands. It
was Dov's rock, the one he had been carrying around for days, a security blanket
of sorts. ... I now realize that Dov spelled 'rock' because he had lost his rock
on the way to the stage. He wanted his rock; he needed his rock. But when
Dov spelled 'rock,' Soma pushed him, until he spelled out what she wanted him
to."
(p.352-353)

I was relieved that Iversen gained this insight - that she recognized Dov's need for local coherence, and understood the loss of local coherence that came with the loss of his rock. I was certain that this knowledge would make her realize that Dov's dysregulation in the demonstration was an understandable reaction to that loss, and did not make him a "behavioral wreck of a person." I scanned the pages ahead, looking for the conversation in which Iversen apologized to Dov for failing to pay attention, for not working harder to understand what he was trying to say, for pushing him to perform in the midst of overwhelming and unreasonable conditions, and for blaming him for his reaction to them.

I hope that the conversation happened in real life. It didn't happen in the book.

At least, I don't think it did. I'm about 25 pages away from the end of Strange Son, but I've finished reading it.

It may be that Dov's story is not really the story that Iversen intended to tell with this book; unfortunately, it was the story I wanted to read. Though the book's subtitle calls it the story of "two mothers and two sons," at its most basic level, Strange Son is a book about one woman's take on autism - one woman who knows a lot about the science of autism. I learned a great deal of information through her writing, and she made me ponder issues I'd never considered before. But, really, I am not particularly drawn to books about the science of autism. I am drawn to parenting memoirs; and, to my mind anyway, at its most basic level, Strange Son is not a parenting memoir.

And so, I've stopped reading just a few chapters from the end of the book. I realize that there may be great insight in these final chapters. There may be a glorious "a-ha" moment ahead. But that will be for another reader to find out.

I'm off to spend time with my son.

3/2/07, 6:00 p.m.
Addendum to Original Post:

In the interest of full disclosure and in response to some commenters who seem to have interpreted this post as an unprovoked attack on Portia Iversen's parenting, I'd like to add this: I received a complimentary copy of Strange Son from Iversen's publicist for my review. I knew when I accepted the book that I would need to post my reaction to it, no matter what that reaction was. I'm certain that both Iversen and her publicist would insist on getting an honest review. Anything less would compromise the integrity of us all.

This post is intended to be a review of Strange Son, and not a commentary on Portia Iversen or her parenting. And among the positive reactions that I had to the book (Iversen presents compelling information about the science and research of autism; Iversen writes with great intellect; Iversen's account of her tireless efforts in promoting autism research is impressive), were less positive reactions (I found some of her language when writing about Dov jarring; though the book promotes itself as the story of "two mothers, two sons," Dov struck me as a supporting player with a minor role for large segments of the book; I would have found the book more engaging if she had written more about her parenting and delved more into her life with Dov.) I've tried to capture all of that in the post above.

26 comments:

Anonymous said...

I haven't read the book but I have to wonder if you're being unfair? As the mother of an autistic child you know that there is no blue print for how best to parent an autistic child. Perhaps the way she dealt with her child was the best way she knew how. Perhaps she felt that her research and the subsequent creation of CAN was the best way to help not only her son but also herself. I've met so many people who have autistic children and yet they keep their heads in the sand - ignore it and it's not real - ignore it and maybe it will go away. At least she was doing SOMETHING.

Have you considered that maybe she falls on the autism spectrum as well (and has never been diagnosed)? Perhaps her interpersonal skills aren't the best? And if her interpersonal skills aren't the best and her son's aren't as well, where does that leave them?

My son is largely non-verbal. It is so incredibly difficult to break into his little world. I never know what he's thinking. I never know if he understands what I'm saying to him. I never know if he's aware of his surroundings. There have been many days when I simply walk away from him...because I don't know what else to do or how to get through to him. And what do I do when that happens? I research ways to possibly help him. I try different methods. But I can't sit in front of him for hours trying to engage him and failing miserably. It doesn't do either one of us any good and I find myself falling into a real and deep depression.

Parenting any autistic child can be hard. Parenting a non-verbal autistic child can be very, very difficult and challenging. Instead of answers, we get screams and yelling. Instead of knowing what our child wants or needs, we get hits and kicks. There is a VERY REAL difference.

MOM-NOS said...

I'm sure that there is a very real difference, Anonymous, and I tried to convey that in my writing here. I can't possibly understand her (or your) experience fully or know what I would do if I were in her (or your) place. I'm sorry if that was not clear in what I wrote, and if you find my opinion unfair. I'm not saying that my opinion is the "right" one - but right or wrong, there it is.

Anonymous, I hope that you will read the book and let me know what you think about it from the perspective of a parent whose son may be more similar to Dov. I'm genuinely interested in knowing.

MOM-NOS said...

Anonymous - two other thoughts in response to your comments:

Here is the first thing: Bud is verbal (though he still struggles with language), and I think that people would consider him "higher functioning" than Dov. Yet I cannot imagine a scenario in which I would agree to have him participate in a demonstration on a conference stage in front of a large crowd of scientists. Even if his presentation would raise awareness and funding, I would not expect him to do it because I would know how overwhelming the conditions would be for him. So, given that I should be more understanding of Iversen's additional challenges with a "lower-functioning" child, shouldn't she also be more understanding of Dov's additional challenges as a "lower-functioning" person? (Please refer to this post for more on my thoughts about the terms "high-functioning" and "low-functioning.")

And here's the second thing: I can't imagine writing a book in which I refer to my son as "a behavioral wreck of a person." I can imagine thinking it in a moment of desperation. I can imagine saying it out loud to my husband, or even to my trusted friends. But I cannot imagine identifying him by name on the pages of a book and calling him a "behavioral wreck of a person."

So am I being unfair? Maybe I am. But I don't think I'm the only one who is.

Anonymous said...

I too have a non-verbal son. I agree with anonymous. I am reading the book and have only been through the first few chapters. I understand her wanting to find an answer since her son can't tell her. I receive the same responses, yelling, hitting and throwing. But a few times I did think one way yet, JD was doing the right thing. For example, we were getting out of the car when my youngest was crying. I told JD to get out of the car and he jumped into the front seat. I yelled NO and told him to get out of the car! He then grabbed his brothers blanket and stuffed animal to give to him to calm him down. I had no idea he even understood emotions let alone what may calm down his brother. I ended up crying for realizing how much I didn't understand how much he knew. So yes, I did feel bad. I am pretty certain this author did as well but like you said, it was not conveyed in the book. I think the purpose of the book is to explain CAN and how it started. Maybe not so much of the touchy feely stuff related to her son. but more on the scientific side and research side.

Mom-nos I have also read George and Sam which I thought was kinda boring. I read Making Peace by Susan Senator whom I felt was a bit cold and strange. But I finished the books. I like seeing others perspectives. I may not agree with them, but I finished them. Why don't you finish the book? Maybe in the end you will feel differently and if not, that is ok. We are all different just like our kids. My favorite is Daniel Isn't Talking.

I see your other message. Maybe she was just conveying what her state of mind was at the time. Thinking crazy, emotional and at your wits end!!

bubandpie said...

Parenting Bub has made me aware of how difficult it is to love first - to love someone in the absence of signs that they recognize, appreciate, and return that love. Even with newborn babies, there is usually enormous feedback that allows a parent's love to grow. With Bub, thankfully, there is now that feedback as well (lots of it), but for a long time there wasn't: he didn't seem happy, or bonded, or attached: he didn't seem to want or need me. It took me a long time to feel emotionally attached to him.

I, too, am horrified by some of the things you describe from that book - but I'm uneasily aware of how likely I might be to parent the same way under the same circumstances.

Anonymous said...

I had a chance to interview Portia Iversen for the About.com Autism site. She's a neat person... certainly not autistic... very motivated. I must say, in re an earlier commenter's comment, that she reflected the same voice as in the book: she certainly appears to be less engaged with her kids than with her work.

Now, to be fair, I think that's a fairly common trait among women and men who, like Iversen, worked hard to build a career.

I've also found that I'm, for example, FAR less willing to "advocate" for my son by fighting battles with the schools than I am to actually spend time with and teach my son! This, to many parents, would be a big problem: many feel it's my job to advocate. Instead, we're planning to homeschool, which we feel makes better use of our own talents and interests than would law suits and due process.

I guess my point is - I think Iversen's gone with her own talents and interests, to do what she feels helps her son the most. And clearly, unless she's been badly fooled by Soma and her "pointing" approach, Iversen has been extremely successful both for herself and for her son!

Anonymous said...

You may say that you don't know what you would do if you were in the author's place but by your writing, you convey that whatever it would be, it would be perfect because you're a better mother. Your entire post seemed judgmental and condescending.

I can't imagine referring to my son as a "behavioral wreck" either but her book is what it is - an honest retelling of her life with her son. I wouldn't want to read a sugar-coated memoir that would do nothing but make me feel bad about the way I parent my own child. Susan Senator takes a lot of flack for the way she writes because she tells the honest truth about her feelings - but they are what they are and every single autism parent understands what she thinks and feels and does to at least some extent (whether they admit it or not).

As you say, Bud is verbal and visibly engaged. But what if he wasn't? I believe your first instinct would be to spend more time with him, engaging him, understanding him, letting him know you were there. But you can't possibly understand how frustrating and depressing it is to live day after day after day with a child who can't talk, who can't/won't engage, who you have no idea whether he understands anything - anything! - that comes out of your mouth. You can't possibly understand the feeling of endless rejection when night after night I sit on the floor trying to play with my son and he completely ignores me.

I try not to judge. No one is a perfect parent - not you, not me, no one. We all parent in our own way - hopefully with our children's best interests in mind. Throw in a disability and parenting takes on a whole new look. I can only hope that we're all doing the best we can for our children.

kristina said...

Mom-NOS's assessment of the book, which I have read in full and also listened to in CD format, is thoughtful and thought-provoking as is all of her writing about autism is. My son, Charlie, almost two years of whose life I detailed on Autismland, is a lot like Dov based on what Iversen says about him, and based on what I know about Charlie from all the time that he and I have spent together. ( I do work full-time; all of my work time is scheduled for when Charlie is in school and, as usual, I am about to rush out to meet his school bus.)

The book ends with a description of a CAN fund-raising walk; Iversen refers to the numerous people who are at the walk and the amount of funds raised; on the last page, Dov spells out "rock." In the final chapter, Iversen also details how she and Soma fall into some disagreements; Some and Tito are now in Texas.

Charlie does not have too much language (short sentences that are not always too clearly articulated). Still, I feel I can somewhat "translate" for him. His body language, the other sounds he makes, the way he wraps his blanket around himself: These are his ways of communicating to me. I have to learn his language. Just as, I have learned about Bud's ways of communicating---not always verbal---through the photos that Mom-NOS posts.

I appreciate Iversen's dedication to researching the science of autism. Despite all the information "out there" about treatments and therapies, I think we all feel the same moments of being "at a loss" as to how best to help our children, esp. when they are non- or minimally verbal; for Iversen in her book, it seems that science is the seat of answers and she painstakingly describes her process of discovery. She also draws, to a lesser extent, on fairy tales, as I noted in this post on changelings and the pied piper on Autism Vox.

The autism stories I am most drawn to tend to center on an autistic person her or himself, and on the writer's experience of being with that person, and this is why Mom-NOS's blog is one of my favorite autism reads.

Kristina Chew, Ph.D.
AutismVox.com

MOM-NOS said...

Anonymous (from the 1:23 comment), I had a similar response to yours when I read Susan Senator’s book – I wrote about it here.

You wrote in your comment: “You can't possibly understand the feeling of endless rejection when night after night I sit on the floor trying to play with my son and he completely ignores me.” And you are absolutely right. But you can’t possibly know how much respect I have for the fact that you sit on the floor trying to play with your son night after night though he completely ignores you. That’s an amazing thing you’re doing.

My hunch is that Portia Iversen also spent long nights sitting on the floor trying to play with Dov. As I said, she very obviously loves him with every fiber of her being. But those long nights don’t get much airtime in Strange Son.

I think that the other Anonymous commenter (from 12:01) is right – the book is designed more to tell the history of CAN and Iversen’s work than to be a chronicle of her day-to-day work with Dov. As I said in the post, I think that the story she wanted to tell was just different from the story I wanted to hear. That doesn’t make it a bad book. It just makes it a bad match for me.

And 12:01 Anonymous, point taken. I'll finish the book tonight and if it changes my thinking I'll post about it in the morning. Thanks.

fed up with portia said...

Portia makes it quite plain that she avoided Dov for a few years after his diagnosis. She says it in the book. He's in therapy all the time and at various schools, she's spending all her time learning the science of autism and calling researchers and working to raise money to cure autism NOW.

I think the book is awful, full of purple prose and is meant to glorify Portia and her view of autism (there is an auditory autism and a visual autism). I can not abide the woman. I don't care who thinks it's mean to say it.

She and her husband objectified their son and called him an empty shell to the whole world. They used him to teach the world that he was a kidnapped, soulless empty shell. Do no tell me that this kid didn't hear this said about himself by his own parents and wasn't affected by it. The book makes it quite plain that Dov heard everything around him and remembered it, yet there is no apology to Dov anywhere in the book.

Portia treats him mainly as a curiousity (Strange Son?) and a being to be interviewed, more than a precious son to love.

The thing with the rock at the end of the book was appalling. They have Dov out there particiapating in a walk-a-thon to raise money to rid the world of kids like him, maybe as a tragic model of what no one wants, as they are walking along Dov starts to stim on his favorite rock, which bugs his father. Mom isn't there. Dad can't cope with son stimming on rock so takes it away from son. After they get back to the stadium and there's more goings on (probably exhausting) and they help clean up the mess post event, then Dov won't get in the van with his family to go home. He sits down on the ground and won't move. Family thinks he's being awful and typical stubborn autistic thorn in their sides. Mom thinks to hand Dov his alphabet board. Dov writes, "rock." Dad says, "oh yeah, I took his rock away from him hours ago." Dov gets rock & is able to get in van. Mom reflects on how important it is for her to feel understood, and so it must be the same for Dov. No one really apologizes to Dov for all the neglect and abuse he suffered (being called an empty shell). Dov actually proves that Soma's method is not applicable to him because he learned this massive amount of stuff like how to read Hebrew without any "rapid prompting" he just picked it up from being in the same room where it was being taught (while being an empty shell).

Shestack really comes across as an ice-princess, if not a refrigerator mother. Not that that caused Dov's autism, but man, what a cold blooded thing. She interviews Dov like he's a stranger to her, and that after he's been comunicating for a while with his board.

Dov cries when he sees video of himself because he's not normal, and can't speak normally or even point at a fast enough rate or something, he's a failure in his own eyes. Well, no doubt. He's not cured and it's been more than 10 years since his parents wanted to cure him "now."

Tito is similarly shocked and horrified when he learns how not normal he is through participating in research to teach him to talk.

How is all this goal of making them normal hurting them? NO ONE CARES, not in that book.

butterfliesmom said...

mom, I applaud you. Your keen mind led you to plough through an exhaustive account of data, searching for something, anything, that could help bring you to some greater understanding of your son. Your connection to your heart and spirit (and the heart and spirit of your son) kept reminding you that these particular pages offered nothing of any value to you. Because you are a mother who already understands where the gift lies -- "to spend more time trying to engage with him, trying to understand him, and trying to let him know I was there - for him, and with him."

I can't even begin to imagine the mountains that Dov had to move in order to cross the threshold of that immensely crowded, overstimulating environment, let alone cross the stage as the sensory center in his brain must have been exploding, and THEN, after having lost his rock, his grounding element, STILL somehow manage to complete typing the words "igneous, sedimentary and metamorphic." Just reading that one paragraph was torture for me.

My son is 21. He spoke clearly until age 20 months, he took books to bed with him, he was bursting with language, but after that, "autisms" began to show more and more, and his speech became harder and harder to understand. I dug for information everywhere, discovered lots of helpful ideas (I wish there had been a computer, and all of you, to connect with, then!) -- and I found a lion's share of wisdom in autistic people themselves, especially Jim Sinclair, and from sensory integration therapy (good "SI" OTs were pretty tough to find then), and from learning to listen deeper and deeper to my son.

He began typing on a letterboard at age seven, thanks to my own reading and my need to hear him. Resistance touch at his wrist helped him "get going" (it literally sends serotonin to the brain). He needed weighty pushing against his wrist to keep going. When he peered into my eyes with a pleading look that said "Please just read my thoughts," I'd say "I'm sorry, I can't read your thoughts the way you can read mine. Can you focus right now, or do we need to try again in ___ minutes?" Giving him the options greatly diffused his frustration. It was largely at school, or with someone who wouldn't, couldn't bother to appeal to his dignity and intelligence when any sort of bolting or jolting would ensue.

He needed a lot of deep squeezes, running, riding, swinging, jumping. One day, after he’d had a good run in the woods (nature always helped. And vigorous exercise), I asked him to please explain to us all what he needed most. (Things had been deteriorating at school.) He gave me that look, typed "You know," and I said "I’m really sorry, honey, I don’t know. I only know what I need. I can guess about a lot of things you might need, like less sugar, or more water, or more bear hugs, maybe a bike ride or scooter or trampoline for when you’re feeling "jumpy" at school (his word), more time with the trees...but we all really need to hear your ideas.
He painstakingly typed,
"Just give me love. Just give me hope. Just give me jokes. And treat me bold."

We are body, mind, spirit and heart.

When we are heard in each of those ways, we have hope.

My son has a sixth sense that is way off the chart, which caused him "brain jolt" triggered by OTHER people's emotions. It took years, and tons of messages from him, for me to figure this out. It took about as long for him to understand that WE couldn't see or hear the things that he could.

Taking a deep breath helps. Believing that the heart and spirit live behind the eyes, even when the eyes appear vacant (there's a lot going on in there. We just need to find the phone line that works), helps more.
Letting go of our own details and just breathing, helps.

I believe that's why we have these amazing kids. They're teaching us so many other ways to listen -- those light patterns on the floor, the flour-covered kid and kitchen, endless clues in what they do, see hear, think.
And they teach us patience, surrender, empathy.

I think that each of us, and each of our kids, is here to experience and learn about very different lists of things.

So as eager as I was for every new shred of knowledge about autism, for some reason, the CAN brochure landed in the trash a few days after it came in the mail, a few years ago. It was a gut response (and my son had spent years teaching me to take the path of least resistance and listen to that gut) -- and now, I see why.
Maya Angelou said "When people show you who they are, believe them the first time."
This person showed me twice: "Cure Autism Now" and "Strange Son."

(If I HAD been drawn to this book, I would have delved through it.)

MOM-NOS said...

Follow-up to Anonymous 12:01: I've finished the book, and have nothing more to add.

Jennifer_Z said...

I have found both the OP and the comments very interesting. One thing that struck me as I was reading the post is that the mother seems just as disengaged as she describes her child being, just in a more socially acceptable way.

I think my son is teaching me that there is much more to communication than words, but with people with ASDs, you have to really pay attention, it is much more subtle, but it is there. It sounds like she never took time to 'listen' with anything other than her ears.

Thank you for reviewing it. I saw the book when looking for some IEP stuff and was put off by the title, and it sounds like it wouldn't be a good match for me right now either.

Club 166 said...

butterfliesmom, that was inspiring.

Thanks. Because I really needed some inspiration today.

Harvest Mom said...

I haven't read the book, nor do I have any desire to (just the name -- Strange Son -- is off-putting to me), but I wanted to comment to those commenting that they believe Mom-NOS is being unfair. She is sharing HER opinion about the book, based on HER experiences with HER son. I think everyone is going to have a different take on the information contained in any book based on their own personal experience. So if a person's experience and perspective falls in line with the author, they're going to agree, and if it's doesn't fall in line, they're not going to agree. So long as a book ispires you to think, it's probably worth reading. If you've got the time. So many of us just don't have the time, so I'm pretty grateful folks are willing to put their thoughts about books they read on their blogs -- gives me a chance to decide whether or not I might want to make the time to read it. This is one I'll skip. Thanks, Mom-NOS! :-)

Anonymous said...

The boy made famous for being a supposed "empty shell" seeks solace in a solid rock -- and his father gruffly takes it from him.

mommyof3 said...

I haven't read this one, but I have read many. Again, I don't like the title. But, I feel sympathy and maybe empathy for Portia. It seems that even in the ASD world, parents are divided on many issues surrounding ASD. Some moms want to connect, really connect and thrive with their child, all of their child. They love when there is progress, but they love their child when there is not. Their goal is not to have a typical child, but a child who knows he's loved and connected. Some moms cannot do this, for many reasons. So they take their energy, drive, passion and redirect it in what they feel are relevant and "bigger" ways...ways they feel make a global difference. They do this because they cannot or will not stay where they are and change their view of what life was suppossed to be for them. They will not change who they are, but they expec ttheir child too, ironic isn't it? So they love the cause, the research and they love the way it fills them up and justifies the distance they experience with a child in the same house as them. It is a form of the grieving process interrupted and incomplete. It is sad on many levels. Sometimes it is really much harder to reconnect to one child and love that one child and get to know someone who is very different from you. Sometimes I would imagine it is impossible so the parent does something else, anything else to ease the pain. Does she love her son? I am sure she does. But her way may be the only way she could survive. Do we understand? Some of us, maybe can try. Do we want to understand? Maybe not, because we would rather connect with a boy and his rock and cherish that rock and connect through that rock and make the rock an important part of our family, like a blanket or little train, an ipod shuffle or frog or whatever. WE love the rock because our son does. Most of us, don't discount the importance of those little things, most of us know our children well enough to get that those little things are more than just useless. Most of us, cannot relate to Portia. Yet, most of us may hope that her cause may make a difference for someone else. I won't read the book. But I will remember the rock. And that will definitely make a difference in our little family. So thanks Portia and thanks, mom-nos and everyone else for sharing. I have learned, again.
Mommyof3

Mom Embracing Autism said...

I have not yet read the book either, but still found your comments very interesting. I am finding it harder and harder to put up with the "autism is something that needs to be cured" mindset. My child happens to be verbal, has a great sense of humor, and is a joy to be around most of the time. When he is difficult then I get into the mode of "what do I need to do to help him?" That's my job as his mother, plain and simple. I'm responsible for raising him so that he can live to the fullest of his potential, just as I am for my other 2 sons and daughter. I find it difficult to relate to people who "grieve" over their autistic children and treat them like they are sick. I'd rather put my energy into figuring out how to teach my child to communicate, learn, and develop, and along the way respect my child for the unique being that he is!

mcewen said...

Maybe that's her first book - to establish her 'scientific' credentials and there will be a more personal memoire in book two - we hope.
Best wishes

MOM-NOS said...

In the past day, I've seen three other posts about Strange Son come through on Autism Hub. They link to comments about the book on amazon.com, that are purportedly written by Tito Mukhopadhyay - though, of course, it's not difficult for someone to masquerade as someone else on the internet. Nonetheless, the comments have given me even more to think about.

The posts I read were on Autism Demonized, Left Brain/Right Brain, and Autism Diva.

neil said...

I think one of the hardest things to do is to put yourself in someone else's shoes when you feel that you don't think like them to try and see things from their point of view. It's hard enough for parents with neurotypical children to walk in our shoes, but it can be just as hard for parents with kids on different parts of the autistic spectrum. Should we not try anyway and understand autism from as a wide a range of views as possible? Personally, I think anyone trying to do it should be applauded and anyone seeing patterns in dust mites and try to make something from it should be an example to us all. Any chink of light that illuminates for one, illuminates for all.

Astryngia said...

I haven't yet read the comments, my response is to the original post.

I can recognise that impetus to find out, to research, to make reparation in the world before coming back home and then applying it to my own situation - if I could but stay still long enough. I have always done that. On the run. Running away from the pain, I imagine. And knowing there's no-one there to support me in my turn.

And then there's the relationship with her son. Yes, I recognise that, too. While my son was a mystery (prior to the diagnosis which finally shed light on our difficult relationship) and prior to the shattering of all my illusions about ALL my relationships and the mending which began in a therapeutic relationship - that, too.

But oh the pain of reading that last example. He needed his rock and his agitation was because nobody understood him. If I'd seen that situation, I truly believe I'd have known he was asking for something...

But that's because it's so much easier to see when it's not your own, when you're not thinking about appearances and what reflects back on your own integrity and credibility.

I am sad and ashamed to be so human that connecting with the world oftentimes has prevented me connecting with my son and HIS needs, too.

But that has changed now.

Professor said...

Mom-NOS, I applaud you for writing openly and honestly about your reactions to the book, even amidst the hot button topics it raises. Your blog is for your voice, and you are clearly using your reactions to the book as a place to examine your own thoughts and feelings on the matter. Thank you.

Professor Mom said...

I just wanted to say that your post describes the kind of reading that I encourage my students, my children, and my colleagues to do--to really think about more than your gut reaction to the text and more than just the text.

As a parent of four kids, one with autism, I know how hard it can be to read through a text that seems to slap you in the face with ideas and perspectives and emotions that are outside of your comfort-zone on the subject. Kuddos to you for sticking with the book, and with your initial agreement to review the text fairly and openly.

Of course, just because the author's professional self is different from what we would want her personal self to be, we shouldn't villainize her. Sometimes the ways we protect ourselves is through seeming detached to public view--it makes us less susceptible to the criticism of what we "really" do or what we "really" are--because if we know that the detachment is a front, and then that's what people comment on, then we feel safe.

Anonymous said...

I agree with anonymous. Portia Iversen has in fact stated that she has Asperger's Syndrome, and myself, as a mother with a mild case Asperger Syndrome and a child diagnosed with a more severe case of Asperger's Syndrome, I totally understand where Portia is coming from. You really can't be in someone else's shoes - there have been mothers who have committed suicide in despair over sacrificing everything, home, marriage, to help a child who did not respond well to the treatments attempted. The divorce rate amongst parents with autism is over 90%, the parents of special needs children have a considerably shorter life-span than other parents (believe an average of 10-20 years less). There needs less judgemental slamming and more understanding and support all members of the autism community and the choices they make. It's not an easy road for anyone to travel, no matter what path they take.

MOM-NOS said...

Anonymous, can you point me toward the sources of the statistics you cite regarding divorce rate and life span? I haven't seen those rates cited before. Also, where/when did Portia Iversen say she has Aspergers? She did not mention it in Strange Son.