Rewriting History for Their Own Ends:

Cure Autism Now and The Mind Tree

Kiss with eyes they do
I see it all the time
God I envy people
Kissing with eyes
The love flows like
Stars like brilliant
Stars
So really loving how
I love to kiss with eyes¹

The above poem was penned by a young autistic man, and published in a book of poems and stories. His mother, with some help, taught him to write. He could not speak, was presumed by many not to think, and had a good sense of humor and grasp of metaphor. He was the first person in this position to write a book in English. He told people things they had not known before about autism. One professor said, "In the poems he is talking about relationships, and shows an awareness of society and his place in it. He's aware of his own condition and of other people and how they react to him. Being able to reflect on that is something people didn't realize that autistic people did."¹

His name was not Tito Rajarshi Mukhopadhyay or anything close to it.

His name was David Eastham. He passed away in a tragic accident in 1988, and "Kiss With Eyes" was published in his posthumous book Forever Friends in 1990. His first book, Understand: Fifty Memowriter Poems, was published in 1985. Before Temple Grandin. Before David Miedzianik. When they were publishing their first books, his first book was being republished in French as Comprendre. Few people, for some reason, seem to have heard of him.

David Eastham's mother did not abuse him in order to teach him how to communicate. She used a combination of techniques, some of which resembled what's now known as facilitated communication, until he learned to type independently. His mother did not deprive him of food. She did not beat him. She did not tie his hand to a pencil.

Which is one reason among many why I look at my new copy of The Mind Tree: A Miraculous Child Breaks the Silence of Autism -- the American release of the much less sensationalistic title Beyond the Silence: My Life, the World, and Autism -- with a mixture of rage and deep pain. There is no doubt in my mind, after reading the blurbs on the cover and first few pages, that Tito Rajarshi Mukhopadhyay, its author, is being marketed as a commodity. A modern Helen Keller. And if he is Helen Keller, they paint his mother Soma Mukhopadhyay as Annie Sullivan. Given how badly Keller was abused, exploited, and oversheltered by Sullivan and the American Foundation for the Blind, it almost fits.

Oliver Sacks, showing that either he or lots of other people have been apparently oblivious to the non-oral autistics who have come before Tito, writes on the back cover, "The book is indeed amazing, shocking too, for it has usually been assumed that deeply autistic people are scarcely capable of introspection or deep thought, let alone of poetic or metaphoric leaps of the imagination -- or if they are, that they are incapable of communicating these thoughts to us. Tito gives the lie to all these assumptions, and forces us to reconsider the condition of the deeply autistic."⁴ More than one comment on the first few pages say that Tito is the first person like him that experts have ever seen.

What planet have these 'experts' been living on since 1985? Have they been studiously ignoring David Eastham? Sharisa Kochmeister? Lucy Blackman? Sue Rubin? All the others like them? Has everyone?

"Tito is a window into autism such as the world has never seen,"⁴ writes Portia Iverson, her title as co-founder of Cure Autism Now conveniently located next to her name on the front cover. She neglects to mention that countless autistic people, both oral and non-oral in communication, have said the precise things Tito has. I suppose that would hurt her position as holding the poster child for autism in her hands. If she'd only looked around, she would have seen how many other autistic people have been saying these things for decades. In fact, given her prominence in the field, I cannot believe that she has not seen them.

Inside are numerous other blurbs, all paying tribute to Tito's "miraculous" nature. Don't get me wrong. I have nothing against Tito, and agree with a lot of things he says, particularly the importance of pride in autism and a world in which nobody is looked upon as inferior (both of which other autistic people have been saying for years). But elevating a person to this kind of pedestal, and explicitly stating that there have been none like this before him, is stomping all over the autistic people who have worked painstakingly and faced a lot of prejudice to communicate our points of view before now.

These promotional statements also neglect Tito's message in favor of what sort of a person he appears to be. He advocates pride in autism, a concept autistic people have been trying to get across for years. He wants, according to his book, a world where nobody is left out or considered lesser just for being different. Yet he is now the poster boy for an organization that does genetic research for autism prevention through the Autism Genetic Resource Exchange. It makes sense that his promoters in that organization would downplay their part in such research, while simultaneously downplaying those parts of his attitude in favor of gushing about the fact that he's writing at all.

Another example of such gushing, written on the fourth page: "Dr. Mike Merzenich has been studying Tito for more than a year ... he says he believes Tito is not only authentic, but also miraculous. If Tito is a miracle of autism, the miracle worker is his mother, Soma."⁴

Tito's mother.

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 -- according to a New York Times article quoted in the book with the more unflattering sections removed -- 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. We can only hope that she's changed her methods.

Soma first taught Tito to recognize letters and sounds on an alphabet board, choosing English over more difficult Indian dialects. Then she tied a pencil in his hand and showed him how to make each letter, often refusing to let him eat until he could do so.

[New York Times, "A Boy, A Mother, and a Rare Map of Autism's World", Sandra Blakeslee.²]

If the boy tried to look away she hit him hard. That went on for days together. It worked. The boy because 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 a comment

The trouble came when the boy's Dia once 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.

[From The Mind Tree p. 29, and Beyond the Silence p. 19, both by Tito Rajarshi Mukhopadhyay^3,4]

A miracle worker? No more than the man who hit me on the leg until I'd look him in the eye and demanded my allegiance to him as my rescuer from the depths of so-called "childhood schizophrenia". No more than the people who spray ammonia and worse on autistic people to this day in the name of treatment. All this hype proves is that some autism researchers are ready to toss ethics out the window as long as something produces what they view as a miracle. Having seen some of CAN's other research, this isn't surprising.

They are, of course, perpetuating an attitude many abused people have toward their abusers. Note that Tito believes the "trouble" came, not from being beaten, but from his grandmother who tried to intervene to stop him from getting hit. This phenomenon shouldn't be unfamiliar to police who have walked into domestic violence situations where the battered spouse tells them to quit interfering in things they don't understand, or the child begs to go back to their parent who's molesting them. There's a report in an investigation into physical abuse toward me, that states that someone called a security guard and both my abuser and I took off running.

The only difference here is that the words "autism" and "therapy" give CAN apparent license to perpetuate this destructive attitude. If Tito were not autistic, his mother would be in trouble for child abuse by now, no matter how much he'd been taught to believe she was only trying to help.

People are supposed to have human rights, but apparently autism renders us subhuman enough that people can ignore them. Non-autistic people don't have to face the prospect of being abused, tortured, or murdered simply for being non-autistic, so most never seem to think about what it's like to face those prospects every day because you're autistic. The reality, if you're autistic, is that not only can and do these things happen to us daily, but much of the time nobody gets in trouble for it. I invite readers who believe that "the ends justify the means" to think about that for a little while.

As for Tito's authenticity, the researchers have to concede it now because they have no other choice. But they do it at the expense of the equally authentic people who have come before him. Every time they say he is the only one like him, they are silencing David Eastham, Lucy Blackman, Eugene Marcus, and any number of lesser-known non-oral autistic writers who have proven their authenticity over and over again, as well as many who have not yet had that chance.

They are also silencing the autistic people who have been saying the same things as Tito has for years, but who are conveniently portrayed as not as truly autistic as Tito is. Jim Sinclair (who, incidentally, wrote before xe used speech for communication) was an early and vocal advocate for what Tito calls "pride in autism," probably starting before Tito was even born, and co-founded an organization that Cure Autism Now probably wants to think about as little as possible. Countless others have talked about not being defective, or about every last one of the sensory issues that Tito describes -- only when Tito says these things, he is hailed as the first person to ever say them. Poof. Decades of autistic people no longer exist.

There is no possible way this is an accident. None. CAN is well aware of the rest of us, but chooses to act ignorant in order to push their own organization. It would be accurate to show Tito's voice as what it is, what each of our voices is: part of a larger chorus of autistic people's voices, often discordant but all enriching each other. CAN doesn't seem to go in for accuracy, only for exploitation and self-promotion.

Even if the best has happened and Soma has stopped hitting autistic people, this would still be wrong. How many people's words will never be heard because Tito is the "only one of his kind"? How many parents will feel justified in beating their autistic children after reading how it "worked" for Soma and Tito Mukhopadhyay?

The hype, marketing, and hypocrisy of Cure Autism Now and Soma Mukhopadhyay is destructive and sickening. They have not only repackaged Tito's old book, Beyond the Silence. They have attempted to repackage an abuser as a saint, and to rewrite history to silence the voices of all autistic people except one.

Article by A M Baggs, with gratitude to and acknowledgement of all the other autistic people who have spoken out.

Note: It's come to my attention that this article has been misread as if David Eastham and Tito Mukhopadhyay are the same person. They are not. I have attempted to rewrite it in a way that will make this clearer. David Eastham wrote a book of poetry in 1985 and had a similar life story to Tito Mukhopadhyay. The major difference was that Soma Mukhopadhyay hit her son in order to teach him, and Margaret Eastham did not. I was attempting to call attention to the fact that Tito Mukhopadhyay's story is not unique (it has been painted by CAN as utterly unique, silencing those like David Eastham in the process) and that brutalizing autistic children is not good or necessary regardless of autism 'severity'. I was not attempting to call him a fictional character, to say that he was David Eastham, or anything else like that. Tito is a real and separate person who has important things to say. I apologize for any confusion.

References and footnotes:

¹Eastham, Margaret and David Eastham. Silent Words - Forever Friends. Ottawa: Oliver-Pate, 1990.

² Blakeslee, Sandra. "A Boy, A Mother, and a Rare Map of Autism's World". New York Times, November 19, 2002. [Electronic Version.]

³Mukhopadhyay, Tito Rajarshi. Beyond the Silence: My life, the world and autism. London: National Autistic Society, 2000.

⁴Mukhopadhyay, Tito Rajarshi. The Mind Tree: A Miraculous Child Breaks the Silence of Autism. New York: Arcade, 2003. [American release of Beyond the Silence.]

Mukhopadhyay, Tito Rajarshi. "When Silence Speaks: The Way My Mother Taught Me." Autism 99, 1999. [Electronic Version.]

Crow, Liz. "Helen Keller: Rethinking the Problematic Icon". Disability and Society, Vol. 15 No. 6. 2000. [Electronic version in PDF format, requires Acrobat Reader or similar.]

In Good Company:

The following books -- some of whose authors, like Tito, type with varying degrees of independence, some of whose authors still move with assistance, like Tito used to -- show that Tito, while writing very well, is not alone in typing to communicate. He is in good company, and that good company is being erased in the public eye by the selfishness and greed of his marketers. A longer, more inclusive list of books by autistic people may be found here.

• Eastham, David. Understand: Fifty Memowriter Poems. Ottawa: Oliver Pate, 1985.
• Zöller, Dietmar. Wenn ich mit euch reden könnte ... Ein autistischer Junge beschreibt sein Leben. Berlin: Scherz, 1989.
• Zöller, Dietmar. Ich gebe nicht auf: Aufzeichnungen und Briefe eines autistischen jungen Mannes, der versucht, sich die Welt zu oeffnen. München: Deutscher Taschenbuch Verlag, 1992.
• Sellin, Birger. "ich will kein inmich mehr sein" - botschaften aus einem autistischen kerke. Köln: Verlag Kiepenheuer & Witsch, 1993.
• Rocha, Adriana. A Child of Eternity. New York: Ballantine Books, 1995.
• Sellin, Birger. I Don't Want to be Inside Me Anymore: Messages from an Autistic Mind. New York: BasicBooks, 1995.
• Sellin, Birger. Ich Deserteur einer artigen Autistenrasse. Neue Botschaften an das Volk der Oberwelt. Köln: Verlag Kiepenheuer & Witsch, 1997.
• O'Neill, Jasmine Lee. Through the Eyes of Aliens: A Book About Autistic People. London: Jessica Kingsley, 1998.
• Blackman, Lucy. Lucy's Story: Autism and Other Adventures. Brisbane: Book In Hand, 1999.
• Hale, Charles Martel, Jr. I Had No Means to Shout!. Bloomington: 1^stBooks, 1999.
• Rohde, Katja. Ich Igelkind. Botschaften aus einer autistischen Welt. München: Nymphenburger, 1999.
• O'Reilly, Michael J. And Love Was All He Said: Growing Up Autistic. North Charleston: Great Unpublished, 2000.
• Grigsby, Lincoln. The Light Within. 2001.
• Brauns, Axel. Buntschatten und Fledermäuse. Leben in einer anderen Welt. Hamburg: Hoffmann und Campe, 2002.
• Rajapatirana, Chammi. The Vial. Potomac: Anoja Rajapatirana, 2002.
• Romkema, Craig. Embracing the Sky: Poems Beyond Disability. London: Jessica Kingsley, 2002.
• Zöller, Dietmar. Autismus und Körpersprache. Störungen der Signalverarbeitung zwischen Kopf und Körper. Berlin: Weidler Verlag, 2001.
• Page, Thomas. Caught Between Two Worlds: My Autistic Dilemma. Woodbridge: Words of Understanding, 2003.
• Hundal, Ppinder. "now you know me think more": A Journey with Autism using Facilitated Communication Techniques. London: Jessica Kinglsey, 2003.

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