Facilitated, augmentative and alternative communication is allowing
people with disabilities to break through the glass bubble that
surrounds them .
C-H-A-M-M-I.
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 firsthand 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 proved otherwise. 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.
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 speech — what
isn’t on offer is a cure. 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 less aggressive 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.
Smriti Daniel is a Colombo-based journalist
Source : The Hindu Business Line, 30th Oct 2015