Until recently, most of what I knew about autism came from Rain Man. I was surprised to learn, therefore, that a desi is one of the most famous people with autism in the world. Tito is rare – he is both highly autistic and highly articulate. He can explain himself and his behaviors to doctors, thus providing a window into a condition that is still poorly understood: 
Born and raised in India, Tito speaks English with a huge vocabulary. His articulation is poor, and he is often hard to understand. But he writes eloquently and independently, on pads or his laptop, about what it feels like to be locked inside an autistic body and mind…
“I’ve seen Tito sit in front of an audience of scientists and take questions from the floor,” said … an autism expert at Cambridge University. ”He taps out intelligent, witty answers on a laptop with a voice synthesizer. No one is touching him. He communicates on his own.”… [Link]
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p>Tito is one of the most famous individuals with autism in the world, perhaps even more famous than Dr. Temple Grandin:
Several of his poems were published in the National Geographic, the New York Times and Scientific American have published feature stories on him, and BBC has aired an Inside Story documentary about him. His book, Beyond the Silence, which contain writings from when he was between eight and eleven years old, covers the first part of his life story and a special selection of his philosophical texts that were featured on BBC. [Link]
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p>In fact, he’s so prolific that I’m surprised he doesn’t have a blog:
”I need to write,” he said recently, scrawling the words on a yellow pad. ”It has become part of me. I am waiting to get famous.”… [Link]
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p>Although Tito is not the first severely autistic person to express himself clearly, because his case is so high profile, it has contradicted many of the previously held notions about people with autism. In particular, “Tito’s behavior and writings dispel a popular notion that autistic children do not feel empathy.” [Link]
However, it is important to note that both the organization that promotes him and the techniques that his mother used with him have come under fire from autism rights advocates:
Criticism of Mukhopadhyay’s supposedly unique gifts and his mother’s teaching methods comes mainly from the autistic rights movement. Citing previously published poetry and philosophical writing by other autistic people, the movement stresses that Mukhopadhyay is not only not the first to reveal that autistic people think, feel and reason, but that Cure Autism Now, by promoting Mukhopadhyay and his work as a sort of marketed commodity, has deliberately chosen to ignore earlier autistic writers because they didn’t fit a perceived or approved profile … Additionally, the teaching methods employed by Mukhopadhyay’s mother are perceived by critics as violently abusive. [Link]<
p>Tito’s mother who, as written in his own book , beat him so viciously that her husband had to leave the room and her own mother decided she was unfit to parent him. Tito’s mother who … tied a pencil to his hand and withheld food until he’d write. Tito’s mother who is now being held up as a paragon of teachers for autistic children. CAN is paying for a home for her and Tito in Los Angeles, California, while Soma promotes her method of teaching autistic people and Tito gets poked and prodded by scientists. [Link]
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More power and autonomy to Tito. Respect.
thanks ennis for this informing post about autism and about a fantastic human being!
I had a very personal comment to add… but I’ll just say that his family members (even if some of them don’t know it) are VERY lucky that he is able to communicate. I’m happy for him, especially if he’s allowing the scientific research because he knows it will help others like him…
“The major difference was that Soma Mukhopadhyay hit her son in order to teach him, and Margaret Eastham did not.” What is it about Indian mums hitting their kids to get the desired results? I started writing with my left-hand and was always slapped on it, until I started writing with my right one. BUT, I still eat, drink, vacuum, and use my mouse with my leftie. The ambidextrous nature is more irritating than living up to the Indian view that lefties are bad luck. Anyone else heard or experience this?
My understanding Saira is that traditionally the left hand was used for cleaning one’s self after pooing and the right hand used for doing all “auspicicious” activities, such as meditating with a mala, puja, turning the pages of holy books while reading, eating, etc. Therefore Indian parents wanted to ensure that a child’s right hand was it’s primary hand for writing and all these “auspicious” and “clean” activities. Particularly in families that are connected to a temple or some type of spiritual tradition, these things are still considered important. You will find the same amongst obervant brahmins and others.
Even if you ask some ISKCON gurukula (boarding school) graduates, they say their teachers taught them the same, and they are not Indian. It was taught to those parents and teachers by their Indian guru.
Seen this a lot. I run into lots of lefties every day here, but very rarely in India, where they were forced to convert to rightism. Beating, yelling regularly involved.
Attention to non-physical disorders, in general, leaves much to be desired in India. Depression? Forget it. Physical disorders are view much more sympathetically. Maybe not so surprising in a poorer country.
As for inauspicious lefties, atleast they are not considered evil or dumb. Remember, sinister and gauche are European words for ‘left’.
but very rarely in India
I am a lefty. My uncle (mamji) was. I know a lot of them.
Guys, lefty’s in every society have been historically discouraged, especially in Hinduism (by no means the only group)……….you all know (Comment #. 4 is correct) …….
Again, beating and yelling for disciplining children is not confined to South Asia. It is quite vogue in evengelical circles in US of A, as of today.
Kurma,
Do you follow Indian cricket closely?…….there are always left-handed batsman and bowlers in the team
A left-handed batsman throws the whole field setup in disarray, and left-handed bowlers can swing the bowl pretty visously.
This said, mental health in India is in dark ages. India Today has some serious articles from time to time.
Its changing. It has become so common that people are being forced to deal with it more sensitively.
Attitudes in the metros of India are changing fast regarding mental health and things like depression.
Still, many people believe that a depressed mindset may be the result of a ghostly haunting or some tantra done on one by an envious person.
Many people in the region where I reside believe like this.
There was one such case very close to me. Although his family thought he was haunted by a ghost AND cursed by someone, still, they took him to the psychiatrist at the Mental Hospital (Pagal Khana) and he received SHOCK TREATMENT on his brain there.
He has since committed suicide.
My favorite bit of Titoetry (found after clicking the picture above):
When I walked out of the classroom The tail of words followed me Words made of letters Crawling like ants In a disciplined row
Thanks for writing about this Ennis. I’m a neuroscience grad student, and what surprised me most in the article is Tito’s dream of becoming famous. Autistics typically do not care much for attention from others and are usually described as preferring objects to people. In a nutshell, they’re assumed to not possess a theory of mind. It’s interesting that Tito wants to communicate with people and gain their approval. I’m a little confused as to why he’s diagnosed with autism.
I am a leftie and I guess I must thank my parents for never being bothered by it or for trying to change me. There would be a teacher now and then who’d try to set me ‘right’ but a stern word from my mom to beat it would usually be enough.
My personal impression is that prejudice against left-handedness is more common in Southern India, though I may be wrong here.
I have a friend with an autistic child who is a grown man now but when he was a pre-teen, he stayed with us in an ashram in India and he was able to grasp some very deep concepts and put them to paper in the form of some of the most beautiful and heartfelt poetry I had ever heard.
I think he would have blossomed had he been in an environment that was nurturing to him and his abilities, but there was a lot of friction in his family home back in England.
Unfortunately that led to some major anger issues building up inside him over the years and he turned violent as an adult and had a few run-ins with the law.
Disqualifying any cases that don’t fit the theory is a funny way to test a theory, no 🙂
If you click on some of the links, for example the SciAm link, they say that there’s no dispute over the diagnosis. He is not only autistic, but he is severely autistic. As I mentioned, his behavior challenges many of the theories of autism, including the theory of mind. The short version of the relevant counter argument is that autistic individuals are not insensitive, they simply have a hard time expressing themselves in a way that we understand. Thus what we see as impassiveness is really a problem in communication.
But autists are known to be attached to their parents, do fall in love, marry and even divorce. It seems unlikely to me in that case, that they would not be interested in other people at all.
Also, (this is just a layperson’s understanding and I might be wrong) does not having a theory of mind mean simply that they cannot see things from other peoples’ point of view. Does this preclude a positive response to appreciation from other people?
Wonderful. I would be proud had I written that.
Thanks for this Ennis—–the discussion here about left hand/right hand use is very interesting to me. My grandfather (who had Asperger’s syndrome characertiscs) was ambidextrous. And my son Charlie is, I think, too, though he has been trained only to use his right hand. (Charlie is “classically” autistic—-I have plenty to say about him and blog daily about him on Autismland (he is not yet a writer or reader; his preferred “language” is music.) Soma now presents about her “rapid prompting method” (RPM) to teach autistic children at conferences and elsewhere, and also has a website about her therapy techniques. Autistic adults have expressed concern about her hitting Tito; others question to what extent Soma participates in Tito’s writing process. Regardless, I find Tito’s writings illuminating, as my own son does not have a lot of language: One does not have to speak (or speak much) to have much to say.
This video shows TIto and Soma in a conversation with a group of scientists and an autism mother, Portia Iversen.
Kush, that’s not what I meant. I guess I should have been clearer. Surely, the percentage of lefties everywhere must be about the same (though I may be wrong. perhaps some races have different pecentages, I don’t know). What I said is that I saw a lot fewer of them in India. The reason is that they’d been made righties by yelling by parents.
‘Course I know about the southpaws and lefty bowlers. I don’t follow cricket anymore, though. The lefty advantage is not specific to cricket either. Squash, for instance, seems to have a higher percentage of lefties than the general population even here and they sure do throw the righties off. The funny thing is that when two lefties play, they find it tougher than usual as well, since they too don’t play other lefties much.
Dude in my class who was lefty and made to change had the most beautiful handwriting with his right hand and was also the fastest writer. However, he played all sports with his left. I could never understand why his parents made him change. Things are a lot better in our generation. People don’t hide their leftyness at all, for instance, even though they change their dominant hand for writing/eating. That wasn’t always the case, as you said, historically.
I grew up in small towns scattered over the country. When I was in cities, already I could see there were a lot more people who were lefties in plain sight because it was quite OK. The righty kids for instance, never made fun of the lefty kids. But in smaller places, the uncles and aunties caused trouble.
Gotta go now, but I’ll come back and post a minimum of 10 comments later. Run, y’all.
Autism has a very broad spectrum, where individuals affected have varying degrees of aptitude to perform ‘normal’ tasks and conduct as per the socially accepted ‘norm’. Generally people with autism have highly acute senses. The over-stimulus they receive from their surroundings is what makes them lash out verbally and/or physically (i.e. in textbooks – throwing a tantrum). This is also why they do not like to be around many people or in busy places (textbook – introverted or loner). However, their sensitivity also allows them to perceive the world in a very unique way and many observations articulated by autistic individuals have shown that they are highly perceptive and brilliant people.
There is a type of autism called Asperger’s syndrome or highly functional autism. Many people thought to have this syndrome have been known to be geniuses in their own right…. here are some names that one may be surprised to hear: Albert Einstein, Thomas Edison, Newton, George Bernard Shaw, Jane Austen, Emily Dickinson, Van Gogh, Beethoven, Mozart…. and there is a controversy on Bill Gates.
Yeah I figured this out with my friend’s son. They lived in a small council house in a London suburb with a very small garden in the back and I always said he needed to be out in open wide spaces. His parents had a tumultuous relationship and his father was, in my opinion, cruel to him in some ways, though he never beat him as far as I know. But the kid drove him crazy and he let the kid know it, which was not healthy for the kid.
Squash, for instance, seems to have a higher percentage of lefties than the general population even here
I haven’t played squash since ’99. But my left-hand was sure an advantage for back-hand shots.
Except 3 years in States, most of my growing up was in India. I do not even vaguely remember anyone raising an issue about left-handedness – not even once but then I grew in a small campus town, Roorkee.
Quite a few spinners in India have been left handed – Bishen Singh Bedi, Ravi Shastri, Maninder Singh, and also Monty Panesar (he plays for UK, not India but is a Sikh). Currently, some examples include Saurav Ganguly (who is ambidextrous), Zaheer Khan, Irfan Pathan (both fast-bowlers) are left-handed – they are more in present South Asian teams (India, Pakistan, Sri Lanka).
Overall, I fully agree with your comment above and lesser leftys in India perhaps compared to West (#.19)
Thanks Ennis, for bringing this topic to SM. Can’t thank you enough. A lot of people in India are still not aware of autism or what i means and many who know a bit tend to stigmatize it. Sumiti, thanks for your response and adding what i was so feeling like saying. BROAD SPECTRUM is the key. Autism as the word suggests, means being into one’s own world. Many people with autism display an amazing photographic memory and many display echolalia-ie. repeating what they hear. And they can repeat very accurately an entire dialogue too, sometime a long time after. They do learn, though the ways in which they learn are different. some learn through auditory methods and some through visual. Temple Grandin has written a fabulous book on how it is to be someone with autism and how they view the world. Tito is doing a great job too in telling everyone the story from his world, in his own language-something that no one else can describe as well.
Ennis,
“As I mentioned, his behavior challenges many of the theories of autism, including the theory of mind.”
I’ve always felt that “theory of mind” is a confusing moniker. It actually refers to our theory of how other people think or function – empathy if you please. A framework we’re all supposed to be using in order to make sense of somebody’s else behavior. So, it’s not a theory about autism but a cognitive ability that autistics are hypothesized to lack. Also, nobody would call autistics insensitive. And if you ask me, calling autism a communication disorder would be a massive oversimplification. Their communication problems are usually teamed with the inability to maintain eye contact, inability to grasp sarcasm or humor, etc.
I don’t work on autism myself, and I get that there would be a great deal of variability in symptoms. But accepting such large variabilty under “the exception proves the norm” always will not lead us to a better understanding of the mechanisms underlying normal and abnormal brain functioning.
Anyways, at the end of the day we should all be celebrating Tito’s overcoming his disabilities. So I’ll stop nitpicking over classifications and move on.
I have also seen this pressure from parents on their left-handed children to convert. and i believe this is so wrong. because i guess our brains are wired in a certain way and whether we use left or right hand is the manifestation of the same. tempering with this wouldn’t be healthy thing to do. There is another amazing thing i noticed with some people: being ambidextrous. now that raises a question if its genetic or learned trait. there is a defibnite genetic element-how much is manifests from one generation to another is a different thing: My GrandMom was a leftie and both my Dad and i have few things we do with left side better, like holding the bags and jumping on one leg and so on though we have been writing with right hand and doing most things with right hand voluntarily since childhood. Even more amazing is the skill in some people (i have seen it in ambidextrous people only, but if anyone noticed otherwise please share it) to write mirror-image writing with both hands. Mind is the most amazing thing-goes beyond just a bunch of neurons-wired together its a riot :).
Sumiti,
I think that website on famous people with Asperger’s is merely speculation and should be taken with a huge grain of salt.
No, people with autism don’t lack cognitive abilities-they may not express it “our way”, but they can and do express it. and as Vanya highlights accurately, autism is not simply “communication problem”. My belief is that the spectrum is too broad, Vanya. So there may be no norm. One person’s brain is different from another in very micro and subtle but significant ways, may be we are all on a specturm so huge that it will take long time to uncover.
I agree it’s not the most reliable source… just a quick reference I found… I have read about Einstein and Mozart fitting the definition from more some textbooks though. Any atribution of the syndrome is based on retrospective analysis so is going to be subject to debate.
Hey,
Great post. I saw a couple of documentaries (by BBC) on Tito a few years ago and was really touched by his – and his family’s – story.
I wasn’t aware of criticism towards him, though, and it was interesting to see another viewpoint on Tito’s condition.
I have to say though and from seeing film footage of Tito and his mother and from reading about them that she didn’t come across as an abusive person, just a strict Indian mother vs. cupcake baking non-hitting white Mum, which is a stupid dichotomy in the first place but it was the one suggested in criticism of Soma.
What touched me fron watching footage of the two of them wasn’t just Tito’s quiet confidence, intelligence and incredible self determination, but his mother’s overarching love and the dedication she showed in looking after him.
Thanks the the people who posted out links on Asperger’s it was really interesting to see how many people I admire are on there! My old Drama teacher told me her daughter had the syndrome and I think I blurted out something embarrassing and awkward which showed my total ignorance of the condition…but even just reading the comments on here has been really eye-opening and informative.
Tito, you already are 🙂
Oh my gosh how incredibly heartwarming. I was raised by a mentally disabled aunt who for all intents and purposes is more of a complete human than any I know. It wasn’t until I was older that I realized she was special. I love special people, they add such warmth and depth to our otherwise average and lackluster lives.
I get what you are saying JOAT, but aren’t we ALL ‘special’ in some way? That’s one thing that becomes really apparent when one knows or works with individuals with special needs. They can really teach us precious lessons. We all have needs that seek nurturing and understanding. ‘Special’ people just have a ‘special’ way of reminding us of that and bringing us back in touch with basic human values.
I’d like to restate. By special I mean I had no idea when I was growing up that she was any different. She was like anyone else to me, she was wonderful with me and my cousins and raised a whole litter of us. I only understood she was mentally challenged when I passed her mental age but to this day she runs my grandmas house and teaches yoga to children and is larger than life.
She is a lot like “The Other Sister” have you seen that movie. She’s aware yet not all grown up. I truly wish my grandmother had gotten her married and settled into a more normal life, the one she sees everyone having and the one she doesn’t have and wishes she did. She doesn’t always verbalize it but everyone knows she understands and realizes she has missed out.
Tito is one inspiring individual. I recently came across and read his book of short stories “The Gold of the Sunbeams and Other Stories” at the public library and was struck by his honest prose. My favorite piece in there is called “Smiles” – in which he writes about different meanings that smiles can have and reflects on how his own smile is interpreted or misinterpreted. Thanks, Ennis!
I was wondering where I heard the name Tito before…
I recently read the novel ‘The Curious Incident of the Dog in the Night-Time‘ by Mark Haddon. It is written from the perspective of an kid with Asperger’s syndrome (a type of autism). It was an amazing book that told me a lot about kids with Autism.
I do know of someone who was forced to convert from being a leftie, through humuliation and beating. sometimes, this can cause stammering to emerge.
The practise is based in stark ignorance of how the brain functions and is detrimental to the growth of the child, in areas of speech.
Has anyone else had that experience? ( of speech being affected by the conversion from l;eft to right?)
Sumita
So was I.
This really is one of the most fantastic books around.
Am prooooouuud of this dude, not the least because we share a first name! Go Rajarshi!!!!
One of my good friends from college is a Bengali-American named Tito. Though he was named by his grandmother after Marshall Tito, I suspect that he would be quite happy to find out that his grandmother was as engaged wih the Jackson family and Latin jazz as she had certainly been with Communism.
sighs
So many misconceptions, so little time.
Many autistic people actually WANT friends, companionship, attention (you hear it all the time from people working with a kid who does something they don’t like “oh, he just wants attention, ignore him”), even, yes, fame or notoriety. Some of us like to write. Some of us like to do sports-or at least try. Some of us go on blogs and correct misconceptions. Some have our own blogs. Some do all of these things. Some do none.
I’m an autistic person. Not Asperger’s. Not particularly high functioning. I run a blog and a website, am a competitive gymnast, and hated the Mark Haddon book because it was built on STEREOTYPES. Kind of like a lot of the discussion in this blog thread. And RainMan. And Molly. And Mercury Rising. And to a significantly lesser extent, Speed of Dark by Elizabeth Moon (which I enjoyed).
Tito’s mom was flat out abusive. Withholding food and tying a pencil to a kid’s hand is flat out wrong, as is hitting him so hard and often grandmother and father cannot watch (from Tito’s book). Yeah. problem. And there’s the whole CAN is disgusting, we don’t need no stinkin’ cure thing…but no one listens when autistic people say that, whether they type it, say it, yell it (then it’s a ‘tantrum’), or use the little picture cards to indicate it. So many of you heard it here first: We don’t need no stinkin’ cure.
I am somewhat curious about India, having had middle-school and high-school and internet friends, as well as some colleagues and a lot of neighbors, from different regions of the subcontinent. Best regards and respect to Tito, and to all the ‘invisible’ autistics of India.
I am one of those autistics who thinks that humane ways of teaching are best, no matter what culture you are in.
My also autistic husband, a SouthAmerican, comes from a country where the autistic person is not well understood, treated, or accepted… and as a NorthAmerican, I can unfortunately say the same thing of USA. Despite all our scientific advances, we often don’t “get” our fellow-humans.
And I mean ‘we’ the Americans, especially the normal ones, not just ‘we’ the autistics who supposedly may not know/care that other people exist (It’s not true. Most autistics want human contact, though maybe in different ways).
There is a problem of ‘normal’ people who think that people unlike them, whether in race or in neuroconfiguration or whatever, are not really quite truly human. So, I mean that every country needs to practice better treatment of the people whom society tries to make into non-persons.
But Kassianne has said the activist bits better than I would, so I should leave that to her.
PS: I forgot to say that I am glad to discover this blog, thanks to Kristina Chew’s link. And will be happy to read it and learn things.
Fantastic. Thanks for your comment, Kassiane, it’s a real eye-opener.
And I welcome fellow cranky people. Makes me feel I’m not alone. 🙂
Kassiane and Natalia, thanks for sharing your thoughts. I am glad you emphasize that people who have autism also want companions, friends and interaction.
so true. There is nothing better than being oneself to help a child communicate. Use whatever technique for teaching, but forcing is never good.
and whats the meaning of ‘normal’ anyway…..as i always think, every brain is different.
Sumiti,
I’ve known quite a few stammerers and they say they stammer or stammered in the past because of issues with parental rejection in early childhood. I guess if one’s mom or dad is forcing one to use the right instead of left hand, the child could take that as some sort of “rejection” of who they are and maybe that is why they stammer?
But I know several kids who were trained to use their right over left hand early in life and they don’t think anything of it, nor do they have stammering or other issues.
So maybe it’s the WAY in which the kid is trained?
Several people have mentioned the reasons for lefty people being forced by their parents to use their right hand for certain activities. Even though this prejudice existed all over the world since ancient times, my observation has been that it is very widely prevalent in middle class, mainstream Indian families… something I have only rarely observed in the mainstream american families. Here I am talking about current times – say 1960 onwards.
I have read Tito’s book Beyond the Silence and found it exceptionally moving. As for the mother’s methods, before being critical of her, one has to be in the shoes of the parent(s) before judging.
On a personal note, close friends of mine have autistic twins and its just heartbreaking to witness the kind of things they have to go through on a daily basis and how bravely they combat them. For those in and around Toronto, I encourage you to check this out:
http://www.taaproject.com/
Before you criticize autistic people for criticizing beatings and food deprivation, you might want to try our shoes. We are the people who have experienced all of those sorts of things and worse, and it is always uniquely justified when it happens to us somehow, because of what our very existence is said to drive those around us to doing. I mean, think about it, if you were the one being hit, would you want it excused as “we can’t judge the people who are hitting you?”