Today is World Autism Awareness Day. Many debates are afoot among doctors, researchers and parents regarding the genetic and environmental causes of autism, as also why there appears to be a rise in its occurance. But what is agreed upon universally by all sides is the fact that parents of children with autism face a challenge that is daunting. Following are the stories of two mothers from two different parts of the world and their determination to relate with their autistic sons and make them functional in a world where there is little awareness of the difficult condition that afflicts them.
From India, Tito and his mother:
In his mind, bells are ringing, unintegrated sensory stimuli clanging. Somewhere in the house, a chair is grievously out of position, a pillow askew. He has to ignore everything. He wants what all of us want: to be understood. So Tito Rajarshi Mukhopadhyay sits at the dining room table in his home on Shoal Creek Boulevard and writes in a notebook, his mother, Soma, to his right, reading the words one by one as they go from brain to paper.
"I may act different," Soma says, speaking the words her 19-year-old severely autistic son all but cannot. "It is because of my Titoistic traits."
The assumption, once commonly held, was that people at the extreme end of the autism spectrum needed to be locked away, unreachable, unable to perceive, much less communicate meaningfully, express complex or abstract thought or empathize. Tito does. In a notebook, on a word processor or a computer, he writes. He writes his memories and musings, mostly about what it’s like to be autistic, and often with a certain playfulness and wit. He writes poetry. He e-mails. He blogs.
"He opens a window into the autistic soul in a way that had not been done before," says Jeannette Seaver, the publisher of Arcade Publishing, which this month is releasing "How Can I Talk if My Lips Don’t Move? Inside My Autistic Mind." (Tito and his mother Soma now live in Austin, Texas)
From China, Yang Tao and his mom:
When — after many visits to doctors and hospitals — Tian Huiping’s son was finally diagnosed with autism, the only advice she was given was to make use of a loophole in China’s "one-child" policy that allows parents with disabled children to have one more. Alone with her son after her husband divorced her, Tian became depressed and desperate enough to consider killing herself and her son, Yang Tao.
"I made a poison for me and my son," she said.
But when she saw her boy smiling up at her happily, she says she couldn’t do it.
"I thought, I have no right to end his life, and I cannot kill myself and leave him."
From that horrible moment 18 years ago, there grew an incredible resolve — the kind of dogged determination borne of a mother protecting her child.
At one of the many hospitals she went to for help in Beijing, Tian came across a small brochure printed by the Taiwan Autism Association, explaining a few basic concepts on how to teach kids with autism. She read it over and over again.
"I just tried to work a little bit with my son and another boy we lived with," she says. "And it worked — a little bit — but I saw hope."
"If my son cannot go to school, what will happen with him? As a mother this is such a big worry."
Fifteen years later, Tian and her Stars and Rain Education Institute for Autism help more than 3,000 children a day through her school and its outreach program. Eighty children of all ages enroll in her school for an 11-week course with their parents — many of whom travel hundreds of miles from small villages to get help for their children. The parents then return to their villages to try to educate the local population.
Link to Tito’s blog.
More on Stars and Rain Institute for Autism, the school founded by Tian Huiping to help autistic children in China.
Accidental Blogger 
2 responses to “Understanding Tito and Yang Tao”
Another perspective on the ‘curing’ of autism. Some don’t want to be cured of it, and fight for their right to remain as they are, as opposed to being molded into ‘neurotypicals’.
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“Cured” is a much more loaded word than educated or trained in adaptive skills, e.g. social and communication skills training, provided necessary services and supports to navigate the world, etc.
Also, there is not, currently anyway, an objective test (i.e. as there is for hypertension or diabetes or Down Syndrome) for autism. It remains a descriptive catch all for a collection of symptoms, and people who fit the description encompass an enormous range of functioning levels. Of course, everyone who’s behavior doesn’t break the social contract encoded in our laws has the right to be left alone. People with autism who are high functioning and don’t need assistance, like other people who don’t need assistance, are much more likely to want to be left alone. If they have the intellectual capacity to conceptualize about their position vis a vis the rest of the world, they may also take a “bug off” position in rebellion against the pity and rejection of others. Also the DSM-IV-TR says, “In adolescence or early adult life, individuals with Autistic Disorder who have the intellectual capacity for insight may become depressed in response to the realization of their serious impairment.”
Again, it depends on how one defines “left alone.” At an administrative hearing last year, an expert testified about why my client is eligible as a person with autism (high functioning) for services he wants from the Department of Developmental Services. The client can rattle off endless lists of computer and car parts (he reads tech catalogues and little else), but can’t brush his teeth and dress himself without prompting (just wouldn’t occur to him), and struggles because of his extremely limited, concrete understanding of language and social dynamics (when kids in the neighborhood tell him to go up to a girl and say he wants to have sex with her, he does it, without any sense of “other” to tell her what the response might be). The judge asked, essentially, how is that different from what we’d just call a misfit? (Judge was none too bright). The expert’s response was that it’s about the intensity of symptoms. She pointed out that CalTech now provides social skills training in, e.g. how to ask a person on a date, how to introduce yourself. Such classes are essentially identical to what would be provided to a high functioning person with the diagnosis of autism, though they’re also provided to people who don’t necessarily identify as such (though many CalTech students probably could be diagnosed as at least somewhere on the spectrum). My client’s symptoms are severe enough that he can’t function at the level of a CalTech student– he has a subaverage (though not much) IQ to contend with, as well– and he’s eager enough for help and oblivious enough to the opinions of others that he does not mind the label of developmental disability.
Any way you cut it, though, supporting a child with autism is a lot of work.
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