18 November 2007

A tale of two mothers

I wrote the early drafts of this review several months ago, when I first read the book Strange Son. For various reasons, I never completed the review. And for various other reasons, I finally have. So, here it is.
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Although I’m glad that I read Strange Son, I can’t say that I ‘liked’ or ‘enjoyed’ it. On starting the book, I gained an almost instant dislike for Iverson, or at least the Portia Iverson depicted in the book, that made it nearly impossible for me to read more than a few pages at a time.

More than just a personal dislike, I found her attitudes towards other people, especially autistics and most especially her own autistic son, repugnant. I almost gave up trying to get through it several times (my wife stopped at page 26, it angered her so much), but I did eventually make it to the end.

Iverson, co-founder of the Cure Autism Now (CAN) foundation, and her son, Dov, are one of the two mother/son pairs of the title. The other mother and son are Soma and Tito Mukhopadyay. Iverson first learns of Tito while attending a conference she had organized for CAN, as she describes in the opening of the book:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. ... There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?
The bulk of the book describes Iverson’s efforts to answer that question. The first step was to get the Mukhopadyay’s from India to the United States so that Iverson could have Tito studied by various medical, neurological, and behavioral experts. The book is replete with stories of Iverson taking the two around the country to be seen by various specialists, meeting with limited success at many. These little vignettes provide some interesting insight into what the medical profession apparently thinks (at least thought, since most of this happens from 1999 – 2003) about autism. And it is not pretty. “He can communicate? Then he’s not autistic” seems to have been a very common reaction, as was, “His mother must be somehow signalling him with what to type.”

Throughout the book, we (the reader) get to know Tito and his mother a bit.

In a nutshell, Soma changed her role as parent, from the ‘typical’ mother that acts as a guide for her child to dedicating herself to a mother working directly with her son to help him find his way in the world. She helped Tito understand the world around him, and helped him learn how to communicate – quite beautifully – through his writing.

Though the relationship becomes somewhat strained as time goes on, especially as Soma begins working more with other kids, the love between mother and son is evident and never in doubt, at least not in my mind. (Iverson’s depiction of how Soma treats Tito is reminiscent of how a person would treat a pet dog they were trying to tame; based on the rest of the book, I think this is probably more a reflection of Iverson’s attitudes towards autistics than it is an indictment against Soma.)

To me, Soma and Tito’s story was the most important of the book, the story that I really wanted to know more about. It was the story of a parent reaching out to her son, accepting him for who he was and working with that. Unfortunately, their story comes across as a sub-plot to the larger story of Iverson’s devotion to “finding treatment and a cure for autism.”

In many ways, Iverson’s description of her, and her husband’s, reaction during the period immediately preceding and following the autism diagnosis will be familiar to many parents of autistic children. Confusion (What is autism?). Guilt (What caused it? Could I have prevented it?). Despair (Can I cure it?). Embarrassment (I don’t want anyone to know. What will people think of me?) At this point, there are many paths a parent could follow. Soma followed one path with Tito; Iverson chose a very different path.

Where Soma changed her role as a parent and dedicated herself to Tito, Iverson essentially abandons her role as parent and dedicates herself, not to Dov, but to fixing Dov.

The events in the book take place in the late ‘90s and early ‘00s. Sadly, things probably haven’t changed much in the past few years. (I’ve hear that evidence of this can be found in Jenny McCarthy’s recent book about her autistic son, but I’ve not been able to get myself to read it.)