This isn’t a book review.
This is the the unfolding story of some book reviews about Portia Iverson’s new book ‘Strange Son’.
Ms Iverson is a founder of CAN (Cure Autism Now) and wrote this book about her own son Dov and another autistic boy – Tito Mukhopadhyay. Here’s how an author I once had a great deal of respect for described this book:
Love introduced two mothers, one who lived in India and the other in the United States. Their passion to seek health for their children, both afflicted by autism, brought the two women across continents and over oceans. Each stimulated the other with her fervor to find medical breakthroughs. Their story is exciting and uplifting.
Amazingly (or not so in this day and age) the first customer review is written by Tito Mukhopadhyay, one of the ‘strange sons’ who was ‘afflicted by autism’. Here’s his review:
I am Tito Rajarshi Mukhopadhyay.
The book ‘Strange Son’ felt like a ‘slap’ on my face from someone who mother and I trusted the most.
Overstimulation and puberty stage can be difficult for many like me. But getting recorded in a way like that, ‘hurts more than my Autism’.
‘May the writer find whatever she seeks’.
By the way, I ‘hand-write’ and communicate/write my books (the Mind Tree, Gold of the Sunbeams, Beyond the Silence). Next year my new book (untitled) will be out, which will describe my sensory conditions in detail, so that other authors may be more equipped before writing about them as ‘observers’ if they watch the ‘show’.
Regards to one and all.
Tito Rajarshi Mukhopadhyay
Here’s a young man who patently feels that he was used, presumably as fodder for Ms Iverson’s publishing career.
Later on, in a separate review, Tito comments:
Honest from the author’s perspective. Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.
Indeed. I would agree with Mr Mukhopadhyay that Ms Iverson’s perception of him is probably flawed and coming from her odd opinions regarding the nature of autism. The following is from a review by a Lisa Helt:
I can’t believe anyone could write such cruel things about any human being, much less a child with a disability. She uses the words, “beast-like”, “alien”, “possessed by a demon”, “like a wild beast”.
The next reviewer in this thread is Portia Iverson herself who says:
I never use the terms: “beast-like”, “alien”, “possessed by a demon” to describe my son in my book. This inaccurracy and others make it clear that this reviewer has not actually read the book.
What Iverson fails to note is that Ms Helt did not claim these comments were specifically about her own son, Dov. No, she reserved these words for the foreigner. And as Ms Helt points out, she certainly _did_ use them:
Actually, you did use these terms. On page 129,”When I left their apartment that day I felt as if I’d glimpsed into the mind of an alien being.”; Page 116, “‘Tired’ was hardly an apt explanation for the extraordinary scene we had been witnessing … where food was flying in every direction, accompanied by his odd grimacing sounds…”; Page 117, “I emailed Tito that same night and asked him why he behaved like that at the table, grabbing food and acting like a wild beast …”; Page 126, “He dashed through the house and raced toward the fridge, the first stop on the terrible circuit he could not break free of. He flung open the refrigerator door and wildly rifled through its contents… ‘You’ll never get a publisher with this kind of behavior!’ I commented in a low voice”; Page 127, “Now it seemed as if Tito were possessed by a demon.”;
As commenter Anne Bevington states later on:
An alien, a wild beast, possessed by a demon … the author was writing about Tito, not Dov. I’m sure Tito has brought in a lot of attention and money for the author’s organization, Cure Autism Now. This is the thanks he gets. The author owes Tito an apology, at the very least.
Another reviewer, Linda Lange comments:
One thing I’ve gathered from this book is that the author believes whole-heartedly that calling others strange (including her own son, and those with autism) is okay with her. However, she draws the line at others who question strange aspects of her story. Interesting phenomena which deserves contemplation, especially as it relates to the contrast of the journeys of those described in the book. Conversely, those who are being called strange in this book don’t seem to have much of a say on the matter. Truly, strangely upsetting.
Indeed. I can’t see myself shelling out money on this book.
There’s a number of lessons to be learnt from this. Number one, this is the age of the internet Ms Iverson, don’t expect to remain free of criticism from the subject matter of your books whom you have clearly offended and abused the trust of. Secondly, lying in retorts to reviews makes you look silly.
But thirdly, and most sadly of all, you will get away with it. Here’s a section of the review from one Barbara Fischkin:
As for those of us who are getting some flack for saying we want to “cure” autism and give autistic kids “souls”: Speaking for myself, not Iverson, I think this is the shorthand of busy mothers who do many other things. Curing a child does not mean you eradicate him or her. It means you take the best, and perhaps some of the worst, that he or she demonstrates as a human being, and help him or her to show that to the world in the form that is the most comfortable for that individual. My own son, now 19, would, I am convinced, prefer to speak instead of grunt his very strong opinions. He would prefer to waste less time worrying about his bodily functions and the inappropriate way in which they have a mind of their own. And yes, he would like his old soul back, the one that was killed….
Here we have the continuing example of a parent who believes that they can not only speak for, but unfailingly know the mind of, their autistic kids. Ms Fischkin cannot even take the trouble to look up and see Tito Mukhopadhyay’s thoughts on those who would presume to speak for him:
Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.
Note that Fischkin believes her son’s soul is currently dead. Killed. This dehumanisation is a direct consequence of the thought processes outlined in Strange Son.
Update
Read more from Autism Diva and MOM-NOS and the Autism Demonized team blog.
Left Brain Right Brain 
Thank you.
Certainly, I am out of the initial shock.
Memory of episodes get registered in such twisted way that when we hear an experience from someone else, it sounds totally different from our own.
There are so many components in an episodic memory. Then we tend to add our own judgments. That distorts the whole beauty of a thing.
The book was supposed to focus on my test results. That was why I sat for the tests. I thought it could help future therapies which are so behaviour oriented.
It turned out into a gossip-book.
Regards,
Tito Rajarshi Mukhopadhyay
It’s not a very popular gossip book. It’s Amazon rank is very low. It has received almost no coverage in the media. It’s sitting there, a dud. I’m grateful for that.
I’m glad “Unstrange Minds: Remapping the world of autism” is doing so well, in contrast.
About mother and me not having personal talk as mentioned in the book:
The author mis-interpreted it.
We both are respectful of each other’s preferences and sure we may not be like same-age buddies, but we do discuss and give our opinions about every other thing we encounter.
We do a lot of reading together. We are not out-door people, but sure we walk together on week ends.
And we also maintain some personal space after we work.
Regards,
Tito Rajarshi Mukhopadhyay
Hi, Tito, nice to see you out and about.
I don’t think there is anything unusual about there being a little more distance between a parent and an older adolescent or young adult.
That is good to hear. Things get so distorted when the account is described by a third person.
To write about a specific topic, a lot of research needs to be done, specially when you are writing about real characters. You cannot take characters ‘for granted’.
Anyway, the milk is spilled and I am cleaning it up. But I am so thankful for the support I received. Mother specially asked me to thank Madam Clark for understanding my words.
–
Regards,
Tito Rajarshi Mukhopadhyay
Hi Tito,
I am really happy you have a way to “clean up” the spilled milk. Tell your mother Madam Clark says, “You are welcome.” 🙂
I hope you will keep commenting here or on other blogs, even about other topics, or that you get your own blog.
Writing a blog is time consuming, and it would be bad if having a blog took time away from your other writing, but blogs can be very influential tools for changing people’s opinions, so it might be worth your while. The free ones like blogspot have some problems, but you can always change to the kind you pay for later on if you find you like blogging. You also don’t have to allow comments on your blog if you don’t want to deal with too many questions or rude people’s comments.
It was Portia Iversen’s organization that made it possible for Tito and Soma to come to the U.S. and helped set up a methodology for teaching this technique to help others – there does not seem to be any indication of gratitude for this. The remarkable contritibutions of Soma and Tito AND Portia have made when they worked together for the common good of the autism community is what we should focus on. Viciously slandering Portia is not going to help the autism community.
Vicious slander? Strong words. Which ones are the slander?
Sounds more to me like Tito and Soma were exploited. Portia Iverson isn’t part of my community.
Rethink that Sue: It wasn’t actually “Portia’s organization” which made it possible — it was monies DONATED to CAN which made it possible. CAN is a charitable entity operating under specific IRS regulations. The funds held by CAN were not personally Portia’s and she owed it to all of those who donated to that organization to represent said org. in an ethical manner. Some of us don’t think she did so. In that case, we actually have a moral and ethical responsibility to speak up.
Madam Sue,
Vicious slander?
Who signed up our story at a handsome price, behind our backs? We were so hurt at this act of ‘taken for granted’ that we decided to quit all strings from Los Angeles. It was not a story of a jolly X-Mas tree. It was the story of our lives.
We were not thankful?
Why else would mother offer free sessions towards Dov even after the CAN grant was over? Mother told me how much Dov enjoyed Math and one day she would help Dov become a Mathematician, just as she helped me be a writer.
In the mean time the movie was signed. We needed to stay away.
There are many ways of saying ‘Thank you’. Dov, like me began his first words with mother.
Wasn’t that a ‘thank you’ enough? I gave some key chapters to ‘Strange Son’ book. Wasn’t that a ‘thank you’ enough?
Thank you does not mean losing ones belief and self respect.
Mother and I just needed some sort of respect and distance.
And yes Madam, I have commented on the use of liberal words in the book.
I will quote them again. I just felt that they defamed me.
Bringing me to the US does not mean being so honest that anyone can use ‘judgmental’ words.
‘beastly’, ‘alien being’, ‘possessed by a demon…’ -those are beyond honesty. They are judgmental words.
On page 129: ‘When I left the apartment, When I left their apartment that day I felt as if I’d glimpsed into the mind of an alien being’.
On page 116: “‘Tired’ was hardly an apt explanation for the extraordinary scene we had been witnessing … where food was flying in every direction, accompanied by his odd grimacing sounds…”;
Page 117, “I emailed Tito that same night and asked him why he behaved like that at the table, grabbing food and acting like a wild beast …”;
Page 126, “He dashed through the house and raced toward the fridge, the first stop on the terrible circuit he could not break free of. He flung open the refrigerator door and wildly rifled through its contents… `You’ll never get a publisher with this kind of behavior!’ I commented in a low voice”;
Page 127, “Now it seemed as if Tito were possessed by a demon.”;
That shows a a lack of responsibility.
Mother continues to work towards what she and I believe. ‘Empower education and bring out the best from individuals.’
One day we wish to see people with Autism, competing with the regular world and contributing towards the society.
Madam Iversen continues to dedicate her self in some other cause of science and cure. We do not cross her path, because she has every right to follow her dream.
I personally do not believe I am sick and need a cure. So I am not a co-dreamer of her dream. I am proud to be what I am. Call me Strange or Whatever.
We walked a little way together and diverged. Mother and I respect any way. And we respect any person. But we do not respect the ‘acts’ of being taken for granted.
And I ‘chose’ this community because I got support from here.
Regards,
Tito Rajarshi Mukhopadhyay
_”I personally do not believe I am sick and need a cure.”_
I absolutely agree Tito. Bravo.
Tito,
I also agree you are not sick and don’t need a cure. I appreciate how you have behaved so decently to Ms. Iversen, in spite of her lack of respect for you and your mother and your gifts to Ms. Iversen.
You are exhibiting a very mature perspective by taking this position, Tito. In my daily life at work and leisure, I encounter many folks much older than you are, who should know better, acting in ways that you have already decided are “judgmental”. I respect you for that, as it is a quality found too rarely these days.