Strange things about Strange Son

I first became aware of Strange Son when I was trying to publish my own autism memoir. My agent was told that the reason we weren’t getting bites was that an autism memoir was about to come out that would dwarf all the others. The author was a huge name in autism–Portia Iversen, the co-founder of Cure Autism Now–and the book was a miracle cure memoir. Only later did I find out what the miracle was; for now, it was looking like all that publishers wanted in terms of autism memoirs were memoirs of this particular sub-subgenre (cf. Let Me Hear Your Voice and Unraveling the Mystery of Autism and Pervasive Developmental Disorder, recounting full recoveries, respectively, through ABA therapies and gluten-free diets). My agent advised me to retool my material into a non-autism non-memoir, and the result was Raising a Left-Brain Child in a Right-Brain World. The irony was that this title, chosen by my publisher, made my book sound more pseudoscientific than the miraculous autism memoirs it was distancing itself from.1

Reading Strange Son for the first time this week, I learned that there’s one additional way in which Iversen’s book connects to my own projects. It was shortly after its publication that my then-collaborator and I were awarded a Cure Autism Now Innovative Technology grant to do a pilot study of my software program. And it is shortly into Strange Son that we meet, at a Cure Autism Now Innovative Technology conference, one of the book’s protagonists. The person in question is Tito Mukhopadhyay, and, brought over to the U.S. from India via Iversen and CAN, he’s making his first appearance—as the conference’s keynote speaker.

Tito is non-speaking, but is said to type and write independently. As keynote speaker, he types “Hello”, “I am honored to be here”, and “Believe in your children”. But he communicates only when his mother is nearby, and his mother is none other than Soma Mukhopadhyay, the founding of a variant of facilitated communication known as the Rapid Prompting Method.

Iversen is quite clear about Tito’s dependence on his mother. Soma, she notes, doesn’t touch him, except for an occasional “jab to his arm or knee”, but she sometimes “steadies” the alphabet board as he types. Tito rarely picks up the board unprompted and requires oral prompts to keep going. Even when she’s not sitting right next to him, she’s visible to him, making slight movements (as can be seen in videos on YouTube) of her head, hands, and trunk. A second facilitator, Claude, who appears towards the end of the book, is only able to get Tito to type single words and phrases; Soma extracts entire poems.

Tito can also write: he scribbles out a message to autism researcher and neuroscientist Eric Courchesne, who turns white when he concludes, apparently, that Tito is the real deal. But it appears that Tito’s writing is intelligible only when his mother is there in the room with him. Soma “steadies” the clipboard, provides oral prompts, and reads out loud as Tito writes, letter by letter, word by word.

Tito can also read. While he can’t hold a book properly or scan the lines or turn the pages without guidance, Iversen assures us that “certainly if he were read to we knew that Tito could absorb and comprehend the material quite well.” As it turns out, however, this is true only when his mother is in the room. For a reading comprehension test in the lab of neuroscientist Mike Merzenich, Tito is unexpectedly asked to read a story while Soma is out of the room. Even after she comes back and prompts him, he can’t answer a single question about it. When the testers give hints he can supply only generic responses.

When his mother is there, Tito can charm audiences, reflect on his autism, engage in discussions about philosophy and literature, and reflect on his behavior. But his behavior is often impulsive, childish, and violent. He tries to elope from Iversen’s car while she’s driving on the highway; he succeeds, in the middle of the night, in eloping from Soma’s apartment. When he sees cookies or hears them being unwrapped, he charges over and wolfs them down. During his visits to the Iversen’s home, Tito tears through the house and pulls out drawers; in Courchesne’s lab, he knocks down a stack of magazines. He has a meltdown over a muffin—purportedly because, despite growing up in India, he’s never seen “round bread”. When people intervene, he becomes violent, at one point assaulting Iversen and attempting to strangle his mother.

What explains all this? After extensive interviews with Tito and Iversen, observations of Tito’s responses during laboratory testing (most of which occur under the influence of Soma’s presence), and some dabbling in molecular biology and brain science, Iversen believes she has some answers. And the answers, she believes, pertain not just to Tito, but to autistic people in general.

Here’s how it goes. Autistic people experience highly erratic levels of arousal—such that what they experience sometimes makes a huge impression on them, and at other times none at all. Furthermore, because their brain hemispheres don’t operate in concert, their perceptions are fragmented: they often don’t perceive objects as wholes. These two factors make it tough to generalize from experience—to pick things up incidentally from the environment and learn abstract categories. Autistic people therefore need others to narrate their experiences and summon and guide their attention. This, incidentally, is why Tito can’t answer questions about things he experiences while his mother is out of the room: without her there to help him pay the right amount of attention to the right things, there’s no guarantee that he’ll actually take them in.

On top of this, autistic people are monotropic (where have we heard that before?): they can’t see and hear at the same time. Some are visual learners, and mostly look and don’t listen; others are auditory learners, and mostly listen and don’t look. Iversen maps the two groups onto different manifestations of autism: people who speak clearly but uncommunicatively are visual learners, whereas those who speak unintelligibly but communicatively and rely on visual media like print for communicating, like Tito, are auditory. Yes, you read that correctly. Both visual monotropism and auditory monotropism have detrimental effects on language and social skills, but, because they’re the ones who can speak, it’s visual thinkers like Temple Grandin who dominate the autism stereotypes. Auditory monotropists like Tito, who, despite the fact that he doesn’t appear to stumble and bump into objects when he tears through houses or elopes in the middle of the night, is like a blind person. And, since (or at least so Iversen claims) hand flapping and body rocking also occur in blind and deaf people, we now know why we get hand flapping and body rocking in autism.

One top of this, autistic people have poor body awareness, and therefore poor bodily control; they have difficulty initiating and organizing their behavior. Finally, they have a poor sense of time, such that they don’t understand about waiting for things.

So there we have it: an explanation for Tito’s child-like impulsivity, his stims, his difficulty speaking, his lack of eye contact and visual attention, his difficulty with tasks that require polytropic processing (e.g. responding to oral prompts to manipulate objects), and his failure at message-passing tests. Surely there’s no simpler explanation.

And surely there’s no simpler explanation for Soma’s activities either. She has a miracle breakthrough with Tito and wants to bring it to other autistics. But no one in India believes Tito could communicate independently, even when she painstakingly teaches him to write by hand. Having secured an invitation to sojourn in the U.S., she devotes considerable time to cultivating a close friendship with Iversen—telling her, among other things, that “I hope that someday you will say that I am your best friend.” But after the message passing debacle, Soma briefly loses her charm and looks betrayed. Later, as her months-long sojourn is drawing to a close, she manages a sudden breakthrough with Iversen’s non-speaking son Dov: he starts typing about Rosh Hashanah. Soma then makes it clear that she’d like a chance to work with other kids before heading back to India. Iversen brings her to Dov’s school, and further breakthroughs ensue: “Soma’s method worked for them all.” Soma then presents Dov at the annual scientific meeting of CAN, where she gets an “angry, growling” Dov, to type out “igneous”, “sedimentary”, and “metamorphic.” CAN promptly agrees to fund a one year extension of Soma’s stay in the U.S. Iversen’s friend Rob Lemelson, via his foundation, agrees to fund a documentary about Soma’s success at the school. To devote her energies to performing miracles for the documentary, Soma places Tito in a life skills program for severely autistic students (whence Claude). This pays huge dividends: a 13-minute segment runs on 60 Minutes and CAN is inundated with requests for Soma’s services. Meanwhile, Iversen finds Soma an immigration lawyer. Some two years later, Soma and Tito head off to Texas where a family is helping her “set up her own business with an office of her own.”

However much we might wonder about Soma’s agenda, it’s clear that her life with Tito was extremely trying, especially in India, and that she had every reason to do whatever she could to improve her situation as much as possible.

As for Soma’s methods, they bear a crude resemblance to ABA. There are prompts and prompt fading; there’s a gradual increase in the number of possible answers: from two choices, to several, to the open-ended letterboard. But instead of transitioning her clients from prompts that come from her to prompts that come from the relevant environmental stimuli, as ABA does, Soma simply transitions them to ever more subtle prompts: from hand pressure to wrist, then elbow, then shoulder pressure; to knee pressure and board movements; and then, at least in Tito’s case, to prompts that are mostly oral and gestural. She shakes the board to get her client’s attention and then (purportedly) holds it still so that when they look away they can (purportedly) still hit the right letters.

Much more literal than I am about “left brain,” Iversen explains some of what Soma does in terms of brain hemispheres: since the language centers are in the left hemisphere, and since the left hemisphere controls the right side of the body, she sits on her clients’ right sides and has them point with their right hands while holding soothing stim objects with their left hands.

In terms of content, Soma emphasizes facts over more general social and communication skills, and only asks questions to which she knows the answers. This strategy stems from a troubling episode back in India when Tito, asked what he’d had for lunch with his father, produced an incorrect response. Soma then decided that she should only ask questions that she could be sure he was answering correctly—a policy that she extends to all her students and that effectively rules out message passing tests.

Soma’s facts come in the form of oral explanations, written words, and “quick sketches and diagrams on the fly.” While she purportedly teaches Dov about colors, shapes, plants, animals, ocean, mountains, weather, grammar, math, anatomy, and while Dov sits and answers her questions, one has to wonder whether any of this is anything more than disembodied words (or letters) and an occasional configuration of symbols—i.e., whether any of this could possibly connect the child to actual phenomena out in the real world.

Nonetheless, there’s certainly the illusion of learning and of real-world connection. When Soma asks Dov to define “galaxy,” Dov types “group of stars”; at the synagogue during Rosh Hashanah, Dov translates “God” from the Hebrew and types “Why must I doubt everything I know?”

But not everything Dov knows comes from Soma. When asked how he learned to read Hebrew, he types “Pressman”, naming the preschool that he attended where, Iversen now realizes, “there were posters of the Hebrew alphabet, posters of simple words in English and Hebrew with pictures.” He also, she observes, may have learned from the printed words on PECs cards. Indeed, “It turned out that Dove had been absorbing information from all kinds of sources”. Two weeks after the 911 attacks, for example, Dov types to his uncle, a resident of New York City, “Did you know anyone who died”. When asked how he knew about 911, Dov types “NPR”. As for the multiplication tables, he learned those from overhearing his sister Miriam recite them for homework. Iversen’s takeaway: “All this time he understood us”. Non-autistic kids, of course, pick up all kinds of things from the environment and from understanding what people say—largely, at first, through Joint Attention, which in severe autism is severely lacking. But reading, writing, and arithmetic, whatever your diagnosis, generally require more than osmosis.

As far as reading goes, Dov, Iversen notes, seems to understand simple books even with just a “fleeting glance” at them. His comprehension, naturally, is measured by his facilitated answers to questions.

For a while, most of what Dov types is facilitated through Soma. It takes time before his parents and aide are as good at it as Soma is. His aide is first, perhaps because, Iversen tellingly proposes, she was raised a strict Catholic and has no trouble believing in miracles. By the time Dov is 11, however, everyone “who regularly interacts with [him] has learned how to communicate with him.”

Did they all become believers in miracles? Fifteen years on, do they still believe?

Back then, Iversen, determined to document her approach in a way that Soma resisted, set up her own school and trained her own teachers in her own incarnation of Rapid Prompting—what she called “Informative Pointing”. She also founded a non-profit foundation called the Descartes Institute “to support the documentation, study, development, and dissemination of educational and communication methods for low-communicating people with autism,” and, in particular, to describe “what I have learned about how to get a child started pointing.”

Fifteen years on, the link to the Descartes Institute is dead, and while the Carousel School still mentions Informative Pointing, it’s in lower-case letters and buried in a lengthy list of “AAC” input modes. As for strangeson.com, its blog was last updated in 2011; the photos and news page, in 2009; and the Informative Pointing page, in 2007. When I emailed contact@strangeson.com for the latest information about Informative Pointing, I heard nothing.

No one who once believed in miracles is obligated to keep doing so. But those who’ve persuaded thousands upon thousands of others to believe in miracles that they themselves have abandoned have an incurred a heavy debt. Willing themselves to pay it off: that would be truly miraculous.


[1] Raising a Left-Brain Child is mostly a critique of today’s education practices, but with a focus on the challenges faced by smart, unsocial children and by high functioning autistics. While I use “left-brain” throughout the book, I didn’t want it in my title. Within the book, I explain that I intend the term as it’s used by lay people: namely, as a shorthand for a bunch of traits that no other term fully encompasses; not as a reference to a brain hemisphere or a “learning style.”

2 thoughts on “Strange things about Strange Son

  1. The end of your long blog entry is:

    “Fifteen years on, the link to the Descartes Institute is dead, and while the Carousel School still mentions Informative Pointing, it is buried in a lengthy list of “AAC” input modes. As for strangeson.com, its blog was last updated in 2011; the photos and news page, in 2009; and the Informative Pointing page, in 2007.

    No one who once believed in miracles is obligated to keep doing so. But those who’ve persuaded thousands upon thousands of others to believe in miracles that they themselves have abandoned have an incurred a heavy debt. Willing themselves to pay it off: that would be truly miraculous.”

    I just want to note that over 30 years later, my now 49 year-old son Ben continues to use his type of Facilitated Communication. I also wonder what happened to now 26 year-old Dov?

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s