Danuska Da Gama I NT BUZZ
Every individual is entitled to basic human rights and to participate in their community at various levels. However, people with disabilities are often sidelined because of the lack of means or assistance to live a meaningful life.
At least one in 68 children is diagnosed with autism. The figure has crossed the 15 million mark worldwide and is seeing an increase. This year, the United Nations focus area for autism is access to affordable assistive technologies and to enable persons with disabilities to exercise their rights and freedom.
In Goa, Sethu has been doing yeomen’s service to children affected with autism, helping them function in their surroundings to the best of their abilities. In order to gauge the prevalence of children with autism in Goa, in November 2018 they opened a new centre ‘Aaatish’ that has been designed specifically to help kids with autism. Here, it has a range of facilities – occupational, speech and behaviour therapy, social skills intervention, counselling for parents and assessment for special children.
According the UN website, while technological advances are continuous, there are still major barriers to the use of assistive technologies. These include high costs, lack of availability, lack of awareness of the potential of such technologies, and a lack of training in their use.
The available data indicates that in several developing countries over 50 per cent of the persons with disabilities do not receive assistive devices.
Connecting through visuals
Our memory cannot be relied on, whether it’s when we have to memories a 10-digit mobile number or the exact date and time without calendars and watches. Often there is a visual representation and it stays with us. But what about those who cannot communicate verbally? Would they be able to comprehend and understand?
Director of Sethu, Nandita de Souza believes that the vast majority of children with autism are adept visual learners. Technology offers them a range of options to communicate and understand. “With the use of Alternative and Augmentative Communication (AAC) families and schools can help these children learn better and enjoy success,” she says.
Speech-Language pathologist, Anjali Barretto says people with autism have great comprehending abilities, but may express it differently or may not know how to express it in a way that we understand. “Pictures speak a thousand words and Alternative and Augmentative Communication (AAC) gives all children a voice,” she says.
She recalls how a non-verbal preteen with autism would express his frustration with physical blows, kicks and vocal screams. “Since learning to communication using Avaz, a high-tech Alternative and Augmentative Communication (AAC) system, his behaviours have almost vanished. He can now communicate about what he wants and when he’s had enough,” she says. This has allowed the family to dine at restaurants which would otherwise be awkward and disturbing for others.
Reducing language barrier
People don’t always understand what we say. A Goan speaking English and Konkani would face a lot of problems when conversing with people. Although English is a universal language it isn’t spoken in many European countries. Konkani may be understood in Maharashtra due to similarities, but not in Punjab or the North East.
Head, Autism Intervention Services, Andre Velho, says that often the problem is less to do with intelligence but more often a language barrier, especially when one is in a place where the language isn’t spoken or understood. “The challenge is about ‘expressing’ yourself in this place. How do you communicate with other people? Would you be able to demonstrate your brilliance? Definitely not! And that would probably be highly frustrating for you,” he explains.
He goes on to say that if people without disabilities face such challenges, people with autism face challenges every single day. “Their limited communication ability poses huge challenges to their lives, causing them to be misunderstood, held back in life, frustrated,” he explains.
But thanks to assistive technologies like smartphone apps, Alternative and Augmentative Communication devices (AACs) and physical devices, today people with autism cross language barriers and communicate with the people in their world, and this can be a game changer in their lives, Velho says.
An alternative to communication
Today, it’s just not about typing text and taping send on one’s phone. One can use smileys, GIFs, pictures and more to communicate. There are also apps or features within apps that convert text to speech. These have made life easy but also have several drawbacks.
All of the above is categorised as assistive technology used for communication. “We are able to communicate our needs through these ‘alternative’ means. We have the ability to adapt quickly. For those individuals who cannot use conventional methods of communication this becomes the only way to understand and be understood,” says junior speech and language therapist, Mallika Lewis.
“It is unimaginable, not being able to communicate basic needs, emotions and feelings with loved ones because you cannot speak or have limited speech,” Lewis says.
She gives a few examples that highlight the challenges children with autism face: Imagine wanting a glass of water but not being able to ask for it, wanting to tell your family you love them but being unable to say anything because the words just don’t come or seeing the most beautiful butterfly but not having enough words to describe it.
“This is the frustration that many individuals on the autism spectrum experience every single day. Frustration over not being able to voice their needs and for not being understood by their loved ones and caregivers,” she says. In such cases communication boards, speech generating software, etc, are a blessing for such people.
Occupational therapist, Mahera Kantawalla says that she only began to understand the power of visuals and visual supports when she began using picture-based ‘choice boards’ to help children with autism. “They would tell me what toy or activity they wanted during our occupational therapy sessions, whether they preferred to swing or jump on the trampoline, or if they wanted an arm or foot massage or just a break,” she says.
Giving these children a means to communicate through pictures helped provide them with a voice. “I began to notice that the children were less restless and more cooperative because I now understood what they needed and responded to them accordingly. We became effective communication partners,” she says.
However, she says that we shouldn’t take people with autism for granted and leave them out of actively participating or voicing out their opinions.“We all need to remember that just because some individuals with autism are unable to speak, it does not mean that they have nothing to say,” Kantawalla says.