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When her two-year-old son Dov was first diagnosed with autism in 1994, a doctor tells Emmy Award-winning art director Portia Iversen and her husband (Hollywood producer Jonathan Shestack) to "Just hold on to each other and cry. Get on with your lives." (p. 11). This is exactly what the couple did not do. Instead, they hire a battery of therapists, try bunches of therapeutic toys and devices, and Portia Iversen learns everything she can about Autism. Finally, -- realizing that there is a need for much more research to be done on Autism -- they founded the CAN (short for Cure Autism Now) Foundation in 1995, today one of the largest nongovernmental funding resources for autism research.
In this book, Portia Iversen takes the reader through these intense years of her life: She is taking Dov from test to test, driving to therapies and special schools, she is establishing a big funding organization, talking to and visiting scientists all over the United States, she is having fights with her husband, and entertaining worries of the couple's three other children.
This personal point of view, described vividly and enabling the reader to participate in the author's private life, is a touching feature of the book. From a more scientific viewpoint, the thoughts Iversen develops on reasons and possible cures for Autism are most interesting and creative. She recounts her discussions with many leading scientists in this field (including Eric Courchesne, Michael Merzenich, and Vilayanur S. Ramachandran), developing different ideas on how the brain of a person in the autistic spectrum might differ.
But this book is not only on Portia and Dov, it is also about a very different autistic boy named Tito, and his mother Soma. Thirteen-year-old Tito Mukhopadhyay from India is able to communicate by pointing at letters on an alphabet board. As an eleven-year old, Tito had already published two books. He has been educated exclusively by his mother, Soma Mukhopadhyay, with whom he lives in rather simple circumstances in Bangalore, India. The unsettling thing about Tito could be described as the Janus-face of his life: on the one hand, he can be seen as severely autistic, even "low-functioning": He flaps and stims (self-stimulates) and rocks his body, can hardly talk, does not hold eye-contact, is extremely fascinated by repetitive movements, like the ceiling fan. On the other hand, he writes thoughtful poems, reflects on the difference between him and other people, he knows his Shakespeare, and engages in discussions about the conflict in the Middle East. He shows empathy and obviously has what cognitive science calls the "Theory of Mind": he knows that other people are minded creatures like himself.
Portia Iversen is convinced he might be "the Rosetta Stone" to understanding Autism, because he can explain how autism feels from the inside. Iversen wants to learn how Soma connected with him. The question is: If it worked with Tito, could it work with somebody else?
By invitation from CAN, Soa and Tito can come to the United States to be examined by a bunch of scientists. Iversen herselfs interviews Tito about how he feels, how he thinks, and what he remembers about his learning process -- all the while hoping to learn something about her own son who grew into a stranger to her.
In the long run, Soma succeeds in teaching Iversen's son Dov to point. Iversen, her husband, but also the reader is thrilled when learning that the almost given-up boy, unable to communicate at all, proves to be intelligent, thoughtful, even witty. He who never has spoken, about whom everybody doubts whether he understands anything at all -- he all of a sudden is able to do math, he knows the Hebraic alphabet, he can express wishes, feelings and thoughts. This indeed is a very moving part of the book, and it is understandable that Iversen feels obliged to make public the tools that lead to this success.
But this is not the happy ending of this book, in fact, there is no happy ending (until now). Despite Iversen's determination, she finds no way of unveiling the secret of Soma's approach. So the book awakes strong hopes in parents of non-verbal children, but it cannot teach the method it promotes. Soma's behavior is described over and over -- how she waves with the alphabet board, how she prompts the child, how she always sits to the child's right side -- but Strange Son is nothing less than a manual for learning this technique. Surely any parent of a non-verbal child who reads this book will desperately want to know if his or her child might be like Tito or Dov, hidden behind the covers of autism, but still intelligent and thoughtful and wanting to connect with the world. This would be a wonderful and comforting insight, but this is exactly where the book stops.
Soma's technique is difficult to generalize and to test scientifically. She herself has success in working with lots of different children (at Dov's school), but other teachers and parents experience difficulties in applying the technique. Even Tito cannot do much if his mother is not in the room. This calls for criticism and disbelief, and seems to be why the scientific community has not (yet?) engaged in understanding Soma's method. The book does not provide the layman with the means to judge it, neither.
Iversen and Soma Mukhopadhyay now have parted ways, a fact that is only hinted on in the book itself (but gets more clear when researching on the internet), exactly because the disagree on how to train and spread the technique. Soma now has her own institute in Texas. She has trademarked her method, now called the "Rapid Prompting Method", and even her name. She holds a claim to exclusive authority on this method, with which Iversen strongly disagrees. Iversen, on her side, has recently set up a "Strange-Son-Community" on the Internet as a kind of self-help-group for parents. Her goal is to promote the new form of communication as widely as possible.
In fact, both Soma and Iversen claim to be preparing a manual for the method. Soma's website disassociates her from Iverson's book, and Tito himself writes harsh comments on Iversen in different places on the internet, accusing the book Strange Son of disrespecting people from the autistic spectrum, even of name-calling, and of falsely reducing Soma's method to mere pointing. This is not quite true of the book in my view. It is emotional, also on the author's reaction to Titos behavior, but it is full of admiration for both Tito and Soma.
Where Strange Son is a compelling account of Iversen's quest to understand autism, containing a wealth of knowledge of brain research and autism, it is still unsatisfactory in my view. Parents of non-verbal children will surely be interested in this book, though it is sometimes rather lengthy. It does not use much technical language and is easily understandable. The unsatisfactory thing about it is that is not as persuasive as it is emotionally touching. It is a very personal and autobiographic account, and I think it should be very clear to the prospective reader that this book does not provide much help. What it provides are in-depth accounts of autism -- and hope.
© 2007 Miriam Gabriel
Miriam Gabriel earned a Master's degree in philosophy in Berlin, Germany. She is preparing a PhD thesis on Embodied Intersubjectivity.