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 
It is interesting to me that in the final review you post, there is one sentiment I would agree with: “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.” I agree with this; helping a child show their best to the world is certainly admirable. Who could argue with that? (Of course, “the best” is subjective, but, okay). But Fischkin completely undercuts her previous messagge by saying that “And yes, he would like his old soul back, the one that was killed.” Huh? I thought we were trying to help the child be his best? Now suddenly there’s been a murder of the child’s soul?
I have a couple of comments about the reviews I’ve read. I haven’s and won’t be reading the book.
The first is about one of Lisa Helt’s comments. She is quite adamant that RPM is *not* FC and goes on to describe RPM to prove her point. What I see is a pretty good description on FC. I see since I read it last night “C. Clark” has commented. I understand FC got a bad rap and RPM may not want to be associated with it but if it walks like a duck… sounds like a duck….
The second is about my own use of the “alien” analogy, even probably referring to Alex as an alien. I believe I did this right up until he was in grade 10 (13yo) and I believe it served him well. This was mostly done with his educators and had a lot to do with overcoming the notion that “there’s a normal child beneath the autism”. I guess if it weren’t for the sensory stuff I could have gone with a “foreign culture” analogy but the “wrong planet” alien analogy let me bring in the fact that beyond the language and cultural differences the very atmosphere we were all quite comfortable in, he was not. I believe it forced people, myself included, to think “outside the box” and while not disqualifying anything, allowing for any possibility. But again, I never attached a negative connotation to “alien” (or “autistic”) and I believe that came across when I used the term. I don’t think the same can be said for “beast-like”, “possessed by a demon”, “like a wild beast” and I can’t imagine I’d ever have used those words to describe … well, anything, let alone a person, let alone a child of mine.
I have absolutely no regrets about using this analogy as Alex grew up but would I use it *now*, if Alex was 3 or 4 today? Likely I’d have to think long and hard on that one. Autism has enough problems, gets enough bad press. I’d think twice about using words that *others* put negative connotations on. In fact, I never realized alien had a negative connotation. I guess if the point is an alien is “non human” then calling someone “an angel” should carry the same negative connotation …..
Hi all,
I really feel the attack on Portia and the book are unjustified. While she did write descriptions of her son and Tito that many will find offensive, that is not what the book was about.
The book was about learning how Tito is able to communicate and then seeing if she can use the same method for her son Dov. In the end it works! She is thrilled that she can reach her son in a way that she never could before and that he is quite bright.
She now runs a school so that Dov and other kids can learn and socialize using many of the techniques (letter board for example) that Tito’s mom Soma discovered.
The book is not at all about finding a cure, but is about a determined mother that really wants to communicate with her autistic son. In the end, she succeeds!
I really feel like comments were written by people that did not read the book.
I will have an interview with her posted this week.
Thanks all!
Michael
Strange Son was a puzzling book to read. The narrative had a tendency to get rather wound up into the explanations of neuroscience and of the author’s own visits to numerous scientiists and labs, with and without Tito and Soma Mukhopadhyay. Further, references to myths of the changeling and to fairy tales (including a comparison of Soma to the Pied Piper—-a reference with many a double-entendre)—-occur throughout and co-exist rather in contrast to the much longer passages on the brain and its functioning (I’ve posted on the use of the fairy tales here on Autism Vox; Autism Demonized further notes the use of metaphors of changelings and demons in the book). It can also be noted that CAN has used such images before (see More CAN changeling rhetoric.
Iversen left me a ?comment noting that she had never referred, for instance, to her son as “ugly” or non-human” (these are features of the changeling child, as it is, in the fairy tales, the child of a troll or other fantastic creature). When one writes about such myths and fairy tales that have long existed in our culture, and that have strong cultural resonances, it is the case that echoes and associations of other versions of these stories inevitably enters into a reader’s mind: This is something of the power of invoking such stories. It is not possible to refer only to one part of such a powerful myth and not also to realize that such resonances can occur.
The thing is, she did make those references in the book, and the person clearly noted where she did. It’s not “associations”, it’s there in the text that the original reviewer subsequently quoted.
This isn’t the first time Portia Iverson has sensationalistically compared autistic people to aliens. From the Newsweek article Understanding Autism”:
“It’s like ‘The Village of the Damned’,†says Portia Iverson, cofounder of the activist group Cure Autism Now and mother of an autistic 8-year-old named Dov. “It’s as if someone has stolen into your house during the night and left your child’s bewildered body behind.
She might’ve gotten her alien takeover flicks confused. The “leaving bodies behind” bit sounds more like “Invasion of the Body Snatchers”–the “Village of the Damned” kids were born killing machines who all share one consciousness between them. (Or perhaps she was thinking of both movies–I don’t know). Either way, the message is clear: autistic people are inhuman and scary.
Analysis of this and similar changeling rhetoric by Iverson at Autism Demonized here, here and here.
Hi Michael,
_”I really feel the attack on Portia and the book are unjustified. While she did write descriptions of her son and Tito that many will find offensive, that is not what the book was about.”_
Well, like I said, this isn’t a book review. Of more importance to me is what the ultimate authority on what Iverson did – Dov and Tito – actually think and at least one of those people patently feels that he’s been used and misinterpreted.
To me, this follows a continual pattern of non-autistic adults believing they know the minds of autistic people better than the autistic people themselves.
As a teaching method I’m sure Iverson’s is no better or worse than the myriad of others. However, as a book that people will read and gain a view of autism from, this sort of language is dangerous, misleading and degrading.
_”I really feel like comments were written by people that did not read the book.”_
I think its clear from the reviewers referencing of specific pages that they did.
I wish I was clever enough to make judgements re a book I’d never read!
Are you clever enough to understand the first sentence of this post?
Kev, Tito’s review is at the top of the thread of reviews now, but it was not the first review it is the most recent one (not counting the discussions going on in response to other’s reviews. So Barbara Fishkin couldn’t have seen Tito’s review when she wrote hers. Still Fishkin’s comments are gross.
I have “read” the book, I listened to the audiobook. I think it’s a stupid book, full of very bad writing, and I think the whole goal of the book is to get people to say, “My isn’t Portia Iversen just SO wonderful?? She’s a mom, a wife, a Hollywood set director, married to Mr. Gorgeous and she knows science, too! and she’s an advocate for autism!” Blech.
Iversen and her ilk have done so much harm and her fans will not see that. Her book is exploitative of Tito and of Dov, in my opinion.
I’m very happy Tito spoke up for himself. He’s portrayed as a monster at times in the book. I’d like to see someone write about the time Iversen was a monster, because I have no doubt there have been such times. I’d like to see someone sucker her into trusting them, and then be betrayed as Tito feels he was.
I have not read Iverson’s book But i did read Beyond the Silence by Tito Rajarshi Mukhopadhyay. On page 19 of the UK edition he writes:
“Pick up the thing!”
If the boy tried to look away she hit him hard. That went on for days together. It worked. The boy became more attentive to her speech and could follow her commands better. His father was unable to bear the sight, but he had great trust in his wife. So he went to another room without comment.
The trouble came when the boy’s Dia visited her daughter. The boy as usual tried to look lost, and ignored his mother when she asked him to do something. Mother hit him hard which upset the grandmother. She thought that her daughter was the most cruel person and not worthy of being a mother.
This happened when Tito was 4. Does Iverson discuss this abuse in her book?
I totally understand why Tito is upset. And it is GREAT that he is advocating for himself. I read every word of Strange Son. I liked some parts of the book. But the problem with the book, and what must really be upsetting to Tito, is that neither he nor his mother are full-fledged people. We do not learn anything about Soma and Tito – their lives, their backgrounds, their beliefs, etc. The only character is Portia Iversen, who takes narcissism to an extreme. She is the only one who can push science along, and everyone else who has ever devoted their lives to autism is neglected, as if she discovered the science of autism herself. Everyone else is pretty much dismissed as not getting it. Tito is just a tool for Portia to celebrate herself, and this would make me mad too.
Here’s a very odd thing and very very human. I note and Susan Senator pointed out the somewhat watered down version of what ‘cure’ means. Is this a sea change? Is this that magical unfathomable point where the collective mind myopically stumbles on the strange idea that gee – there’s a real person in there and maybe not just a diseased normal person, which is what supports the medical model and a lot of the ‘therapies’ floating around. In some strange way , this ode to narcissism may do the autism field some good since the champion of “I’ve been hard done by and I don’t deserve this’ school of parenting has come out and said, however melodramatically, that autism isn’t what you think. Amazing.
Mike,
I don’t remember any discussion of Portia hitting Tito or depriving him of food, which he has said she did. It might be in there, but I don’t remember it. What Iverson does discuss is that Soma never discusses anything non-ultra-factual with Tito, at least that was Portia’s take. Soma is described as never discussion emotions or anything like emotions with Tito, even though his poetry is about emotions. Soma doesn’t discourage Tito from writing poetry.
Iversen offers her hypothesis as to why Soma never discusses feelings with Tito. I can’t remember what it is, something about how he needs to stay in touch with reality or something.
There’s a little background about Soma and Tito, to me it seemed like she was saying: “Soma and Tito, fascinating and exotic imports, born only for me to discover, useful for me for a time.”
There’s this sappy passage about how Iverson & family move into a newly acquired home, it used to be a convent or something. Portia, though nominally Jewish says she hopes some kind of spirit from the building will do something for her family (?). She decides to paint one room, a sun room or something, “mango” and that is just like, whoa, a really DEEP thing, choosing to paint the walls MANGO because right at that very moment, far away in Indeeeyah, Soma and Tito might have been standing under a MANGO tree waiting for a bus.
Wow. That’s just like … mondo spirichul ‘n sum junk.
She talks about how all the therapies were destroying their savings or something and then a few pages later she’s talking about Shestack’s impressive collection of first editions, that apparently they weren’t so poor that they had to sell.
I hope Tito gets a blog. I hope Shestack and Iversen move into a convent and take vows of silence.
Very interesting take alyric.
Like proberley everyone else here who hasn’t read the book, I don’t have an opinion to express about it except what I heard from those who did is enough to make me stay clear unless a good reason crops up to do otherwise.
Of course this won’t stop the odd person coming in and claiming we are expressing opinions about something we haven’t read.
Mike,
Tito addresses that abuse here
Wow, people are shocked that a cure-mongering, narcissistic parent like Iverson would denigrate autistic people? I mean, did anyone read the mercury parents’ accounts of their kids in Evidence of Harm? Or any of their blog entries? Theirs is an entire culture of demonizing autistic kids who they believe have had their “souls” ripped from them and are living in personal “hells” and all that other nonsense.
Of course, they’ve yet to ever prove that you can actually cure an autistic child, but that’s irrelevant.
oops. I meant “denied in the service of Iversen’s” not Tito’s.
My post didn’t show up so here it is again. I meant to say that Iversen’s representation of Soma is just as troublesome to me as a reader as her representation of Tito since with the exception of a few paragraphs (pp. 22-24) we learn almost nothing about Soma except that she can say the words “C’mon, C’mon.” Her voice — her personhood — is silenced or denied in the service of Iversen’s. For that matter, so are the voices of other major figures in autism philanthropy, research, and awareness. When Iversen writes about founding CAN she says that virtually “nothing was known about the disorder” and that no one was working on it. But CAN was founded in 1995 one year after Eric and Karen London founded NAAR! So this is an insult also to the Londons and the scores of people who worked so hard on NAAR and other societies and organizations dedicated to research and awareness.
Has anyone looked at the review section recently? I’m either hallucinating, or Iversen may of helped to get some of the negative reviews of that book deleted. Five are missing, including Tito’s.
That’s strange. Tito’s is definitely missing, they didn’t take down all the negative reviews, though, thankfully. I suppose he might have taken his down himself…
Glad I saved them then.
Just checked the reviews on Amazon to find the negative reviews on Strange Son missing. How does this happen? I wish they would do it for my books. Anyway… it’s good to see that Tito had his eye on it and has spoken up again:
Reviewer: Tito Rajarshi Mukhopadhyay “Tito Rajarshi Mukhopadhyay” (USA) – See all my reviews
I am Tito Rajarshi Mukhopadhyay.
My voice got removed in this forum.
‘O conspiracy! Thou art yet alive?
In which way and in which guise…
Thou appear again and again….’
But can Autism be really silenced? True, I cannot speak well, although I try (I am getting better at it now).
But I can still write.
I was hurt by the ‘brutal’ description of me when I was struggling with my overstimulation and puberty in the ‘book’.
The Author must understand I do not have anything against the author as a person.
It is the book which hurts.
I am worried how that part would get shown in the movie, which was signed without even consulting us at a handsome price.
–
Tito Rajarshi Mukhopadhyay
Thought I had better save it before it disapears again.
Wow….how very, very strange (Amazon, not Tito)
Tito won’t be silenced…
http://tinyurl.com/yp3mod
http://tinyurl.com/3382w8
http://tinyurl.com/37csfn
http://tinyurl.com/287gnw
Portia’s on autismpodcast.org. Maybe Michael Boll will intereview Tito and Tito can talk about how Portia took advantage of him and how he was exploited by CAN and the researchers at UCSF (and maybe elsewhere).
Portia in the Boll Interview makes it sound like Tito was the “first” non-verbal “low functioning” autistic who could communicate by alternative means and show that they had normal or better intelligence. It’s just so stupid. It exaggerates the idea that this kind of ability is rare. If there were NONE before Tito, then it might be very rare. Also, Soma’s technique is not the ONLY technique that allows “nonverbal” autistics to communicate.
She says it’s best to ask autistics what they think, autistics have been telling Portia and others for a few years what they think of her organization and what they think about a “cure” and Portia and her friends have blithely ignored it.
What’s the point of teaching and autistic to communicate if you refuse to “hear” what they say?? What’s the point of begging for their opinion–if you treat them like garbage when they give it to you?
Tito always was the most talented of the Jackson-5, IMO.
clone, you’re not helping …. :-]
Oh, sorry. Different Tito
Okay, I read a few chapters of her book at a local bookstore this evening, and I think it’s disturbing. It’s less about what is in the book and more of what is kept out. I have little if any reason to believe that Portia has any sense of love or affection for her son, much less anyone else. It’s like other human being are just accessories to her, more like a mask of a predator than a story of a loving and concerned mother.
Perhaps I’m reading more into than I should, but something about the way it was written is just turning on the warning signs in my head.
Ms. Clark,
The abuse that Mike Stanton was referring to was from Soma, not Portia. Soma hit Tito as a child and he has written about it in his book. And no, I did not see any reference to this in Iverson’s book.
Psychoporthic?
psycho poor chick?
maybe socio porshe-ick
or borderline pontiac?
strange woman, any way.
she doesn’t seem to have any friends.
I’m curious… what are some of people favorite books on autism? What are the important books to start with on the topic?
Non-fiction books:
*Unstrange Minds: Remapping the World of Autism*, by Dr. Roy Grinker
*Not Even Wrong*, by Paul Collins
*Elijah’s Cup*, by Valerie Paradiz
*Coming Out Asperger*, edited by Dinah Murray
*Raising Blaze*, by Debra Ginsberg (Blaze seems to be a PDD,nos kid but doesn’t get a label in the book)
*Aquamarine Blue 5*, edited by Dawn Prince-Hughes
—–
Personally, I would recommend them in that order. The OASIS Guide to Asperger’s syndrome (I think that’s the title) is pretty comprehensive and pretty woo free, but it’s all about kids.
I suppose the collected writings on autistics.org are about as good as any book.
MIke Stanton’s book is good from what I have read (bits of it).
It’s — Learning to Live With High Functioning Autism : A Parent’s Guide for Professionals
*Not Even Wrong* is really a really good book and fun to read, if I could only recommend two books, I’d say *Unstrange Minds* and *Not Even Wrong*. Both are by NT parents of ASD kids.
—
The filter is acting up. I just answered Sam from Boston, twice and the comment didn’t show up, so I’m adding it to this one.
I made a mistake, I meant to write (above) that there was no mention of *Soma* hitting Tito in the book, but I put Portia’s name in there instead of Soma’s.
The first book I read when I began to notice my son was not developing parallel to his peers was called “Quirky Kids”.
This is not autism-specific, but puts forth the concept that all kids are different, and some will have behaviors which fit into any number of established diagnostic categories.
This book addresses issues such as over-diagnosis, the benefits and detriments of receiving a diagnosis, etc. It also does a great job of explaining that atypical behaviors are not necessarily indicative of diagnosable problems and, furthermore, that the potential range of human “wiring” should, by itself, eliminate the need to attach negative connotations to any potential diagnosis received. I think it is a great starting point for parents who know “something is up” with their developing child.
Psychopath or narcissist, perhaps a mixture of both. I pray for her children.
As for John Best/Fore Sam-I don’t understand why anyone would think he’s remotely autistic, he’s clearly either a socio or psychopath. Sure, he sounds obsessive over the issues he speaks of, but I think you’d have to be if you’re that interested in making money off of it.
Singer Tepper-Bleeding narcissest. How many other parents goad their kids into telling them that they love them, only to answer back with “I’ll take that”?
I’m becoming more and more convinced most of the people running these cure groups have some kind of personality disorder.
They’d have to have personalities for them to be disordered….
I have read the book Strange Son by Portia Iversen. I found it extremely intriguing, and because I read the book, I subsequently have spent lots of time on the internet investigating CAN and Soma’s method. Regardless of my opinion about the book or the author herself (which I will not relate, as they are irrelevant), it has great potential to reach parents who could benefit from Soma’s method, and should at least be valued as such.
To those who have pledged not to read Strange Son; how can personal attacks and defenses on the author forward the discussion on the worth of her book? At least read it for yourselves and form your own opinion.
By stimulating such controversial discussion, I believe Portia Iversen (regardless of the type of person she is) has done a service to the autistic community; she has brought much attention to autism research, and has introduced a breakthrough in communication with people with autism.
I think people should read the book if they don’t think they’ll be too upset by it.
I just don’t think anyone should buy it.
If folks can get if from a library or borrow a used copy like I did (and I passed it on) then Portia doesn’t get the reputation of having had a great selling book on the “backs” of people who ended up hating her book.
What Portia is advocating through recommending Soma’s method is basically the same thing as Facilitated Communication. Yes, Soma’s method is not what we usually think of as FC, but having a kid point at a letter board, or using a typewriter when he or she can’t speak is HARDLY revolutionary. Iverson is so disingenuous. The reader is left with the idea that this is some BIG NEW IDEA and thanks to Portia Iversen now people can try it with their kids. CAN could have been promoting some kind of version of the idea “the kids are INSIDE there, you need to keep trying and trying different ways to get them to learn to spell out what they want (beyond just pointing to a card with a picture of juice on it) so their deeper feelings can be expressed.
But they haven’t! Some of Soma’s fans (I am not one) are angry because it looks like Portia deliberately kept this idea secret until she could get a movie deal and a book published. It seems like Soma herself is/was upset from what I’ve been hearing from others who claim to know her.
My child didn’t need this kind of help but I know some parents whose children did use FC and it was fabulous for them.
Soma’s rapid-prompting is by no means the ideal method for many autistic kids, they communicate using FC without “do it! do it! come on! come on!” and constantly having someone in their faces. But Portia and Soma promote it as if its such a wonder for the majority of non-verbal autistics.
So in other words, one should put money in Portia Iverson’s pocket even though they vehemently disagree with her message?
I am Tito Rajarshi Mukhopadhyay.
No mother and I never claim RPM is the best method. If others claim, it is their own opinion.
We just claim that it is ‘different’ from FC.
It needs verbal prompts to keep the hand ‘on track’ and teaches how to write. There is no crime in that. When I was typing in India, no one would publish my work, although I began to compose poetry since an early age in 3 languages, because mother taught me 3 languages .
That was why I had to hand write.
We have presented in FC conferences and never disputed any technique. Dr. Biklen visited us in India and we spend many moments discussing other autistic people.
Regarding my abuse- It is a matter between me and mother. I am proud of every spanking I got. I am proud that mother educated me. I am proud that mother loved and spanked me. Every spank I got remains a ‘fond’ memory, yes a fond memory.
I grew up just as any other child grows up in India.
Today, mother is my best friend. I will live in my family and will not live in a group home.
My father will join us, once mother gets her green card.
–
Regards to one and all…
Tito Rajarshi Mukhopadhyay
A review I wrote for Amazon.com was posted here in excerpted form and, as a result, has been seriously taken out of context. Please be more careful. If you look at the entire review, copied below, you will see what I have said about my son’s Herculean efforts to re-build his own soul, which, yes, was eradicated when he suffered a severe regression at three and a half and lost all his language (he spoke English as well as some Spanish, Cantonese and Tagalog.) When he became autistic he was very depressed,so much so that it indeed seemed as if his very soul had fled his body. He has been able to communicate this feeling to me, although writing a post here is very hard for him. But I hope that if he wants to do that, he will try. He is, by the way, now a trimphant young man who communicates most frequently in a non-verbal language which I believe he created. Today he went to hear a beloved local elected official speak and affectionately walked out in the middle of the speech. The offical, a friend of Dan’s understood him – and his tone – chuckled – and said “Okay Dan, I’lll wrap this up now.”
Below is the ENTIRE review
I met Portia Iverson, the author of this fine book, for the first time about a decade ago at a CAN gathering, where she described how she had sent herself back to school to learn more science so that she could help her son, Dov, who has autism. Then, for hours, she analyzed what she had learned and applied it to autism both by speaking herself — and by questioning and commenting on other speakers. I had never heard anyone put together the skills and understanding of a mother with the skills and understanding of science so well. Portia Iverson does not have a PhD or an MD. What she does have is a smart mother’s ability to use both intuition and knowledge to analyze, predict and lead a charge. After the conference that evening, I told her that she might very well be one of the people who solves the autism puzzle and STRANGE SON only convinces me of this more so. I’ve met a few other mothers like Portia Iverson; the ones who can put science and insight together and I feel they will lead the rest of us. Some are working in the field of communication, others with the medicine of autism. Portia Iverson seems to be doing both.
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 by the regression that hit him at three and half, the one he has had to re-build in whatever way he can without spoken language. It would be nice for him to re-build it whole.
In STRANGE SON Portia Iverson writes about a mother, Soma Mukhopadhyay, who helped her son, Tito, to build and re-build, and to concurrently show what was inside him, with a language that while pointed rather than spoken, is extraordinarily articulate. Portia Iverson writes about her own efforts to do this with her son, Dov Shestack. She writes about it with both a scientist’s mind and a mother’s heart and insight. And because she is also a wonderful writer this book has tension and suspense. It is an important story and a good read, too. I found myself bending down the bottoms of pages that were either wildly illuminating, or familiar in a wildly comforting way. See the bottom of page 192 and of page 306 (when Dov types the letters IEP) for some examples but there are many many more.
To respectfully correct an earnest, earlier post: Soma Mukhopadhyay’s method of Rapid Prompting and Facilitated Communication are two very different methods. Some children respond to one and not the other, or to neither. Or, in the most wonderful of cases, to both. Both methods put great store in independence, when possible. More methods for communication have been around and more await, I am sure. What many share in common, though, is that people, some of them tunnel-vision scholars, like to brush off the communication that is right in front of them because it comes from individuals who do not appear as if they are “there.” Appearances, as we have learned with all disabilities, can be deceiving.
If you have or know an individual with autism, or the family of one, please read this book and give copies of it to others. It explains secrets and mysteries – and it leads us to the ones we still do not understand. Fortunately, Portia Iverson and Soma Mukhopadhyay are working on it.
I for one will not buy a book that promotes the whole changeling mythos…lived it, thanks anyway.
Portia has done precisely DICK for autistics, quite the contrary CAN seeks to disenfranchise autistics as much as possible…that is, when they aren’t acting like we aren’t capable of being enfranchised to begin with. A favorite of her minions at conferences is “you’re too articulate to be autistic, people who AREN’T like you need a cure”.
She doesn’t NEED my money. Quite the opposite is true, I think, and if she’d listened to people far before she met Soma and Tito she’d know that no one stole Dov’s mind and that there always WAS a person there.
“If you have or know an individual with autism, or the family of one, please read this book and give copies of it to others. It explains secrets and mysteries – and it leads us to the ones we still do not understand. Fortunately, Portia Iverson and Soma Mukhopadhyay are working on it.”
How’s this? If you have an autistic family member or if you are autistic yourself. Don’t waste money on Portia’s book which is down in the dregs on Amazon.com already. Read what autistic people say about themselves and about Portia Iversen and CAN and about whether they lost their souls (including autistics who are considered “low functioning”. Yeah, they have blogs and websites, too. See: ballastexistenz blog for one.
Don’t waste a penny on Portia’s sappy, self-glorifying purple prose and descriptions of how she abused her relationship with Tito M. If you need to, get the book from a library. See his comments on her book on Amazon.com.
I am Tito Rajarshi Mukhopadhyay.
Unfortunately mother’s name got tugged in all through as mother was not the one communicating with journalists. If she did, her words were not quoted.
There was a spokesperson in CAN who was talking for her. Mother just keeps her words to her work.
Her work is heard only to those who ‘want’ her services.
No she never claimed to solve any mystery. She believes in service only for those who ‘want’ it.
Regards
Tito Rajarshi Mukhopadhyay
I am Tito Rajarshi Mukhopadhyay again…
I am sorry to miss this part…..
Mother has 9 sessions throughout the day with half an hour of lunch break in the middle. She comes back in the evening and works with me before she cooks dinner.
Where is her time to solve the ‘mysteries’ of Autism, when she does not believe there is any mystery to it.
Regards,
Tito Rajarshi Mukhopadhyay
Hi Tito,
It’s nice to “hear” your voice over here on Kevin’s blog. I hope you drop in from time to time and comment again.
Hi Tito,
Good to have your input. Thanks for commenting. It must feel very odd to be the subject of a book you had no input to.