Chandima Rajapatirana’s first word, painstakingly spelled out, letter by letter, was a revelation. He had had no means of communicating in the 17 years that led up to this moment. Few suspected he had anything worth saying.
Raised by his Sri Lankan parents in the US, he was first diagnosed with autism at the age of four. Later, doctors added apraxia — a motor disorder that hindered his ability to control body movements — to the diagnosis. Chandima was mute. He would be forced to listen, unable to voice protest, as experts told his mother that her son was ‘retarded’ and should be institutionalised. He would bite, scratch and bang his head against the wall. All the while, he watched the world pass him by, and saw his ‘normal’ siblings discover it in ways he could not. Then, on the cusp of his adulthood, his mother, Anoja, finally found a communication technique that worked for him. Chandima began to type using Facilitated Communication (commonly called FC).
His first word was notable not only for breaking his silence, but by altering the way his family spelled his nickname — using an ‘i’ instead of a ‘y’ — he was demonstrating autonomy and will.
Today, Chandima can type independently, without support from his facilitator, if need be. He is a poet, author and an advocate for the rights of disabled people. In 2007, his mother Anoja and he returned to Colombo to open EASE (Educate, Advocate, Support, Empower), a small centre where they offer free support and education to people who have disabilities.
Parents visiting them are often astonished by Chandima. He is effectively bilingual, and can ‘speak’ in Sinhala by switching his English alphabet board for a Sinhala one. His collection of essays and poems, Traveller’s Tales (published this year) with brutal honesty addresses how he experiences anxiety and sensory overload; why he might have trouble in a crowd, or making eye contact, or even simply sitting still.
For instance, this is what it can feel like to try and have a conversation: “When I want to speak, my impulse goes to my body. Gyrating cursed limbs take over. My arms fling up, my hands join and wring… Speakers open their mouths and words pour out. I open my mouth and scream. Your sounds emerge modulated, shaped into words. Mine emerge unmodulated, unshaped, un-understandable squeals. The reality is that I sound like an animal. It is an awful thought. The awareness of how bizarre I sound kills the desire to speak.”
Though Chandima relies on FC, he tells me that he and Anoja are aware that there is no single technique to suit everyone. “Best you just say that I am not the last word, nor the first word, just one of many,” he types out.
Autism is a complex developmental disorder that appears in the first three years of life, impacting the brain’s development, its interpretation of sensory input, as well as social and communication skills. The condition manifests across a wide range of symptoms, which is why the diagnostic label is Autism Spectrum Disorder.
“Children with autism have varying communication challenges, and it is very case-specific, so it is difficult to generalise,” says Soharni Tennekoon, a Colombo-based speech therapist. Autistic children may be entirely non-verbal or may have a rich vocabulary on specific subject matters, she explains, adding that many have difficulty interpreting or employing the non-speech elements — eye contact, facial expressions and body language — that inform so much of our communication with each other.
Chandima’s friend Jennifer Seybert knows that an autistic person is as likely to misunderstand as to be misunderstood. Only diagnosed as an 11-year-old, she remembers: “I was tuned into the world around me but not being able to communicate was hell. I was locked inside a glass bubble, figuratively, pounding on the glass to let me out; however, all that was being noticed was my behaviour.” When her parents introduced her to FC she was already in her twenties. A new way to communicate brought with it a different kind of emotional turmoil. “Being locked inside of myself for 24 years, I had much to work through and process. Trusting a world outside of my autistic world was scary but I was determined to make this work,” she says.
‘Making it work’ for Jennifer, as for Chandima, has been about embracing an engaged and purposeful life. She earned a BA in Psychology in 2006 and a Master’s in Disability Studies in 2012. She is an active autism advocate as well.
It is only in recent years that we have begun to hear from people like Chandima and Jennifer. The few first-hand accounts of autism that existed were produced overwhelmingly by those described as high-functioning autistics, namely, able to converse using speech. In Autism and the Myth of the Person Alone, American educator and FC champion Douglas Biklen points out that the use of the term ‘high-functioning’ is problematic as it implies that someone who cannot speak has less intelligence than someone who can.
Douglas’s book includes a chapter on Tito Rajarshi Mukhopadhyay and his mother Soma. Tito grew up mostly in Bangalore, and was home-schooled. Acknowledging that most people would consider Tito’s case severe, Douglas says, ‘the dominant view is that three-fourths of people with autism are mentally retarded. It’s not true, but that’s the view.’
Tito has done more to prove that view wrong than many. He is the author of books including How Can I Talk if my Lips Don’t Move?, The Gold of the Sunbeams and The Mind Tree, which he wrote before he turned 11. He was anointed a miracle, and his mother the miracle worker. Together they appeared on 60 Minutes II, featured in the BBC documentary Tito’s Story (2000) and were in the pages of The New York Times, National Geographic and People.
A mother’s dogged determination made all of this possible. When Tito couldn’t hold a pencil, she attached one to his hand with a rubber band; when he panicked because a power cut stopped the anchoring whir of the fan above him, she stood beneath it, moving the blades manually with a long rod until the power came back on. She talked to him incessantly, read him Shakespeare, Hardy, Dickens and insisted he attempt his own poetry and prose. During the 60 Minute segment, the interviewer asks Tito what his life would have been like without his mother. The camera follows his pencil as he responds: “I would have been a vegetable.”
Soma has since collated the techniques that worked with Tito into her Rapid Prompting Method (RPM). Today, over 600 clients between the ages of two and 50 have come to study with Soma, who ‘begins by identifying in individuals how and which of the senses dominate.’ Her approach is in many ways unique and parents have attested that the results are quick and dramatic. But like FC, it is not for everyone.
Whether it’s FC, RPM or any other augmentative and alternative communication (AAC) strategies that offer options for communication, what isn’t on offer is a cure for autism. In an email, Texas-based Soma says, “I wouldn’t advise ‘hard work’ to folks who are already doing hard work. I wouldn’t advise ‘patience’. It is easy to advise. Many times impatience works wonders too. I would suggest — keep going because the way is the way through. There isn’t a way around.”
In the Chennai office of Avaz, an AAC app has been evolving steadily. In 2011, it got its inventor, Ajit Narayanan, on to MIT’s prestigious TR35 list of the most exciting young innovators in the world. The Avaz app is meant to be a part of a child’s daily life, and relies on a clever augmentative picture communication software to help parents and teachers work with children. (The price — $99.99 — and the need for a device such as a tablet computer to run it may be one reason why the app is downloaded by more people outside India.)
As the company works to build an Indian market, the head of its product development team, Narayanan R, argues not just for basic communication but also language that is richly expressive and nuanced. “Imagine if Stephen Hawking was always given a vocabulary of eight pictures to communicate with everyone around him. How much research would he have contributed?” Narayanan asks.
One must believe, regardless of appearances, that a child is capable of communication. “The first rule for any speech therapist/special educator is to presume competence,” says Narayanan. “A lot of times, it’s the disability of the medium that we use to make them ‘understand’. Hence it’s not their inability, it’s the medium’s inability to get through to them.”
In Narayanan’s experience though, it is worth making the effort: “It gives them tremendous self-belief and enables them to achieve more. They can participate in classrooms, socialise with peers, write stories, and express pain, anger and love.” Certainly, to be heard for the first time can be a profoundly empowering experience. In a testimonial on the Avaz site, a young man named Mukund writes that on being able to communicate for the first time he knew: “we could live like other human beings. We knew we could belong to the world of human beings.”
The one thread that runs through these diverse narratives and emerging techniques is the commitment to return agency to autistic people themselves. Cynthia Blasko, an autism advocate and communication trainer in the US, thinks it is high time we did so. “We have done a horrible job historically, when it comes to including people with disabilities in the discussion about their development, because there has been a belief that they cannot participate,” she says.
Blasko, who is also the parent of an autistic child, believes individuals with autism could benefit greatly from being told about their diagnosis and how it may affect their sensory experience. “We need to teach how current neuroscience explains some of the differences in how the autistic mind works… how psychology and sociology and modern linguistics all contribute to our self-perception, as well as others’ perceptions.”
Back in Sri Lanka, MM Nirmala Priyangani, a seamstress and single mother, travels hours by bus to bring her daughter Ashini to the educational programme run by EASE. Bus rides used to be a nightmare — Ashini would often pinch and bite strangers around her. The mother-daughter duo would be accosted by hostile stares and comments. Unsurprisingly, they often chose to stay secluded at home. But there too, in outbursts of rage, Ashini would physically attack her brother, and throw his books on the floor.
Nirmala suspected — and her friends and neighbours could never resist confirming — that Ashini’s autism was the result of vengeful karma. But things have changed since they became regulars at EASE. Being recognised as an intelligent being by her family has gentled Ashini. Nirmala knows they have much to learn about autism and each other, but just to have been given the chance seems like a miracle. “I used to think that her autism was a punishment for my sins,” Nirmala says, tears in her eyes, “but now I am glad I have this child, because I can love her. She is not a punishment, she is a gift.”
Today, Ashini is generally calmer than she has ever been before and happily spends time with her brother. Her family thought that the 13-year-old girl was severely ‘retarded’ and never expected her to speak. But recently when her grandfather dropped a cup of tea, she gasped, “Aiyo!” A single word proved just how far Ashini had travelled.
First published in The Hindu Blink (Cover Story) on October 30, 2015. Words by Smriti Daniel. Pix courtesy Anoja Rajapatirana.