The Changeling and the Pied Piper: Fairy Tales and Science in Strange Son
January 2, 2007 by Kristina Chew, PhD
Filed under Health
While Cure Autism Now (CAN) co-founder and autism mother Portia Iversen’s just-published book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism charts her journey to help her autistic son Dov by learning everything she can about the science of autism and the latest scientific research, references to fairy tales recur throughout the book. The opening paragraphs of Strange Son refer to the myth of the changeling, in which a human child is stolen in the night by evil beings (such as trolls or fairies) and replaced with a non-human child.
It was his mind they came for. They came to steal his mind.
Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew. Except that I could feel it. Not that I wanted to. Believe me. They were very, very dark things. And there was no way to get rid of them.
Sometimes I could hear them, late at night, when the house was very quiet; a creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere…….
Night after night, I sat beside his crib. I knew he was slipping away from us, away from our world…..
And then one day, it happened. He was gone. (pp. xii-xiv)
In much of Strange Son, Iversen depicts herself as spending hours at the UCLA and USC medical libraries xeroxing research papers (pp. 32-33). She hires a post-doc in molecular biology to tutor her (p. 33), is in contact with many neuroscientists, neurologists, and many other scientists (to name a few: Dan Geschwind and Bruce Miller, p. Dr. Guinevere Eden, p. 184; Dr. Vilayanus S. Ramachandran, p. 201). She brings Tito Mukhopadhyaya and his mother, Soma Mukhopadhyay, to the labs of numerous scientists who test Tito’s intelligence and abilities. In chapter 13, “Dreaming in Sound,” Iversen presents a novel hypothesis about the two types of autism, auditory and visual:
..the visual autistic child, precisely because of his preferential use of vision, would have a distinct advantage when it came to imitating motor skills and behavior, especially the ability to produce speech. But this advantage would come with a high cost: the preferential use of vision would diminish development of auditory processing with catastrophic results in language development.
The auditory autistic child, on the other hand, would develop language. But he would have a different price to pay for exclusively listening and not looking. Because of greatly decreased visual activity, the auditory autistic child’s ability to imitate would suffer, severely diminishing his motor skills. This would impair his ability to produce voluntary actions and behavior, including spoken language. This type of child might always be perceived as cognitively low-functioning, even if he was not. (pp. 277-278)
Iversen posits that Tito, being at “the more severe end of the autism spectrum,” has the auditory type of autism, while Temple Grandin, well-known for describing how she “thinks in pictures,” has the visual type of autism. (A recent post here on Autism Vox on autistic children as being visual or auditory learners led to a spectrum of responses.) Neuroscientists Pat Levitt, Director of the Vanderbilt Kennedy Center for Research on Human Development, John Mazziotta, Chair of the UCLA’s Department of Neurology, and Martha Herbert of Massachusetts General Hospital and of the Harvard Medical School praise Iversen’s “genius…to observe and listen,” her being a “leader in changing our outlook on this disorder,” and her “[reframing] autism as a profound mistiming of the senses” (from the book jacket of Strange Son, which indeed reads as a kind of tour-de-force review of numerous developments in research about the brain and how these apply to autism).
Iversen continues to draw on references to fairy tales throughout Strange Son. I noted in a a post a few days ago that Iversen describes Soma Mukhopadhyay as the “pied piper of autism.” When Soma and Tito visit the Carousel School that Dov attends, the other autistic children are able to do things—even simply to sit still—in Soma’s presence: “Soma seemed to hold some kind of magical spell over them; it was as if she were the Pied Piper of autism” (p. 349).
This particular comparison may say more than it might at first appear to. In the legend of the Pied Piper of Hamelin, the piper plays such enchanting music that he charms all the rats in the town to follow him out of the town to their death, but the townspeople refuse to pay him. The piper returns and enchants all the town children with his music. They follow him up to a mountain and into a cave, whose opening slams shut, after which the children are never seen again.
Like the changeling myth that Strange Son opens with, with its references to “dark spirits” who steal around Iversen’s home in the night and who steal her son’s mind, the Pied Piper legend is about children taken away—stolen away—from their parents. One difference is that, in Strange Son, Soma is (as Iversen describes her) the miracle worker who, through her teaching, can help Dov communicate. Iversen indeed describes Soma teaching Dov by having “capture, commandeered, even kidnapped Dov’s attention” (p. 324), rather as the piper does with the children through his music. (Although, in keeping in mind what happens to the rats and the children under the sway of the piper’s music, Iversen’s comparison of Soma to the piper seems a bit puzzling.)
In the proper manner of fairy tales, the longed-for miracle does happen in Iversen’s Strange Son. Dov, thanks to Soma’s teaching, is able to point out letters on an alphabet board and show that he is indeed intelligent—Dov truly emerges, the lost child restored. Even more, Iversen can be said to truly emerge: She depicts herself as a relentless, unstoppable force who brings together scientists, figures out a piece of the mystery of autism, brings Soma and Tito all the way from India, and shows herself a happy mother and wife; the book ends with her and her family at a CAN walk that raises nearly $1 million (p. 377). Strange Son is equally her story, perhaps most of all.
While all that energy & determination may be admirable, I can’t help but wonder who was minding Dov while Iverson was researching, contacting, connecting…? I do not have the resources to live as Iverson does & I would not choose to. I do not see my kid as someone who has to be “saved” or “rescued”. No spirits took him away from me- he’s with me pretty much all the time except when at school. I prefer his company to all the scientists in the world… am I not doing as much for my kid (& maybe by extension, autism) as she is?
YES.
(Obviously!)
Iversen does seem to have plenty of help—Dov has an aide who comes to their house at 7am to get him ready for school (p. 217).
Wish I had that much energy for such a marathon. I have a tonne of books to research, but I’m always reduced to crisis management [read specific relevant chapter or page] My ‘good intentions’ don’t get me very far.
Cheers
Sam didn’t slip away — his language did, but he was always there where he and I could connect.
(And sometimes it’s so hard when he wants Mommy, because Mommy “gets it” better than most anyone else, and someone else desperately needs Mommy right then. I’m so glad we got the big recliner we did — it’s good for Mommy and any 2 kids. All 3 is too much, though!)
I think Charlie would enjoy one of those, now that you mention it.
It was the same with Charlie and me. He has always been Charlie, always tried to express himself without and (more and more) language.
My grandfather always called me the pixie child, like a changeling, but it was with general wonderment of the things I could do (like being made of rubber and titanium, in spite of having no hand skills at 4…and reading at 2….and being petite and cute in a family of striking and large people).
But I never got the idea that was a bad thing till I read the CAN changeling mythos. Then the next time I saw my grandfather and he called me his pixie granddaughter I shivered. Not because being who I am is inherantly bad…but because others seek to make it bad.
Thanks for this, Kassiane. I have often thought of something a bit “otherworldly” about Charlie’s face, with his huge eyes and expressions, but I have never been comfortable referring to the notion of him having some kind of “otherworldly” good looks because of the changeling myth; because of its suggestions that the child one has is not a real (a human) child.
The boy I have is the one I love to be with.
He DOES have otherworldly good looks, if we’re going pre-anime…huge eyes, elegant fingers, clear skin, OPEN expressions. Really a beautiful young man.
Thanks to exported cartoons he (and I) would probably be more likely to be compared to anime characters. A very talented artist & friend of mine drew a portrait of me that hangs in my living room and it’s anime style, the original sold at an art show to benefit an art program for autistic folks. What’s funny is everyone who saw it on the table knew it was of me.
I know a LOT of autistic people who look like anime characters. And quite a few who dont. Hm.
Heh. My sister takes after my mom’s side of the family, I take after my dad’s; there are pictures taken when I was 3 at a gathering at my mom’s brothers that have me looking like the “changeling” of the lot, and one taken at the time of my father’s mother’s funeral that have my sister looking like the “changeling”. (And there is something vaguely fey about my sister — not a bad thing at all. And she’s a lot farther from autistic than I am. I was just an odd duck and Sam is a much odder duck and C. is somewhere between us in odd-duck-ness right now, which is fine. T. is close to normal, if his combination of strengths and weaknesses could be labelled “normal” — behind the curve on speech, but way ahead of it in spatial reasoning.)
.As I call Portia even stated it was painful to spend time with Dov,due to her inability to engage Dov(or vice versa),For YEARS! Explain that to me? Your son needs you and you just ELECT to “Check out” the way the books reads is that it wasn’t till he began to communicate via RPM that she found any interest in spending time with her son.Did anyone else pick up on that? This book IMO,is all about how Portia wears an “S” on her chest and she can be Wife,mother,advocate,scientist,researcher etc without any bumps or bruises along the way.How the hell can anyone “relate” to this womans book when she didn’t dare to open up and make herself vulnerable to her readers so that they would truely feel a “real” connection vs just reading a “story”.What Dov never had anxiety or uncontrollable behavior,problems with impulse control or perseveration? No poop stories? This was like a well scripted play or sitcom not the “real world” of a mother with a special needs child.For this to be a story about two mothers ,it clearly was not a collaborated project. At least 90 % of this book was about Soma and Tito but nothing about her own journey less the scientific mumbo jumbo.
Yes, she indeed does say that it was “hard” to spend time with Dov and there is a lot of her traveling with Soma and Tito to visit various researchers’ labs, trips to the East Coast (to Columbia University, to Georgetown, to Philadelphia with Soma and Tito where Tito gives a poetry reading in Iversen’s father-in-law’s apartment).
I would say the sections with Dov (and I can’t quote from any or refer to a page number at the moment as I don’t have the book with me) are a little short on concrete detail—certainly compared to Charlotte Moore’s George and Sam (even if she had not included the photos in the book, I can picture her sons exactly, not to mention her house; whatever one thinks of Roy Richard Grinker’s argument about there being no autism epidemic, his descriptions of his daughter give the reader an equally full portrait of what his child is like.
I think it’s in the chapter called “Something’s Burning” (again, I don’t have my copy of the book with me, but I will check that) that Iversen does refer to Dov having some kind of very hyper episode when she comes back from one of the trips she takes. There are descriptions of anxiety and perseveration and behaviors………in Tito.
Hm. That might explain why he was “gone” to her — if she wouldn’t be with him, why should he be with her?
Whatever else has gone on, if I’m with Sam, I’m WITH Sam. And he knows that if we’re in the same place physically, he can usually count on me. (Occasionally I’m a bit dense — he’s trying to communicate something that I would think was important, but I miss the “what” initially. I always apologize as soon as I understand what he was trying to let me know, because that lapse is on ME, not HIM, and he needs to know that!)
A friend (she has typical kids) once expressed shock to my husband when he told her, yes, from the time Charlie gets home till he falls asleep (thankfully a bit earlier lately) that it was him and me for several hours. I had to laugh—-yes, I do work, but everything is scheduled so I can get home to get Charlie off the bus; if he is doing ABA at home, I cram in as much typing or grading or classtime prepping as I can, and then it’s off again. And we have the greatest of times, even just going to the pharmacy or on a walk—-and yes, I am frequently dense about what Charlie’s trying to tell me, too.
Julia, I’m going to remember that first point you made.
Kristina,
Yes,the way she made it a point to be very descriptive of each and every “odd” thing about Tito but yet none if any of Dov.If you see them side by side(when they were young )the similarities are countless.
And Julia,I agree with all that you said in your post..yes,if you are not “connected” with your child then he does not know what your purpose is.Just as if a therapist comes to work with your child and they dont establish a repore(sp) with your child that is fun,relaxed,having constant “circles of communication” verbal and non verbally then a child will not be inticed to be around that person and engage them.
Stacey
Kristina
does Iverson refer to Soma’s abuse of Tito in her book at all. Tito does in his book, written when he was 8yo, about the beatings and use of food as a sanction when he would not comply with his mother’s instructions.
I never finished the book and wrote my review here:
http://www.epinions.com/content_331256794756
The quotes I used and had issues with include,
“Dov was born without a chance in life and he would never get one as long as he lived, so we might as well get used to it and the sooner the better – for everyone, including Dov.”
and
“it is generally accepted that severely autistic people are retarded”.
and
“I imagined Dov as a one-year-old, falling down a deep well, believed to be dead. And then years later, a light shone down that dark shaft and I could see him there, “somehow still alive”