Living With Autism
By Gazala Anver
Kaveesha* looks like every other child. He looks at me, and smiles, but I can see he does not register my presence. He is autistic but it was difficult to say. It was only apparent during his 45 minute training session at Seekers Sri Lanka, where Child Psychologist Shanthi Wijesinghe, by repeating simple tasks, worked on improving his attention span.
“Repetition is the key,” she says, while guiding Kaveesha’s little hands to open and close a zip. Kaveesha grits his teeth in frustration and after a while throws a tantrum. “Let him get his frustration out,” she cautioned, as he presses his fingers together and continues gritting his teeth.
Kaveesha has a case of mild autism. His parents realised something was wrong when he suddenly stopped talking at the age of two. Initially he had an attention span of three seconds. Shanthi gradually brought it up to 45 minutes and by repetition, taught him simple every day tasks, like how to lift and chair and put it back in place.
Kaveesha is, however, one of the lucky few. Not all autistic children in Sri Lanka receive the necessary intervention. It is in fact a multi faceted problem. Dr. Sudath Damsinghe, President of Autism Lanka Foundation, explains that “it is poor knowledge that is causing most of the problems.”
But what is Autism really? Dr. Damsinghe explains it as a developmental delay, which affects three major domains of development, that is social communication, interaction and behaviour. “World statistics differ, but accordingly, every one in 500 or one in 100 people is autistic,” he said. There is however little or no information about autism in Sri Lanka, and as it turns out, there are very few people working to help such children.
Once a child is diagnosed with autism, the real challenge begins. “It is very difficult to help children develop without a plan. They have the love and affection but lack knowledge on how to help development,” Dr. Damsinghe said. “An autistic child finds it difficult to perceive and process information like a normal child, which is why therapy alone is not enough.”
He explains that to help an autistic child, parents too have to be trained. “There are certain principles to fighting autism,” he explained. “First and foremost, one should learn autism inside out,” he said. “In addition to that, there has to be 3 – 5 hours of individual therapy at home. A shadow partner should be developed to attend to the child.”
It begins with therapy in artificial controlled settings, where the distraction is minimum. And then moves on to therapy outside artificial settings. “Do not ever let the child be introverted. That is very dangerous,” he said. “One should try to get them involved in everyday activities, and should try to improve things like eye contact,” he said. “They should be exposed to people, places and events, otherwise they will not learn. No matter how difficult, they should be exposed to the outside environment.”
Currently in Sri Lanka, however, our education system is not geared for this: what is needed is an integrated system where children with autism are allowed into normal schools. According to Dr. Damsinghe, in Sri Lanka there is no proper monitoring of pre school or primary education in general. “It is very tragic that we do not have mental readiness to accept these children to pre schools,” he said, explaining that most institutes simply refuse to accept children with special needs.
In addition, he explains that Sri Lanka does not have the necessary infrastructure or trainers to help these children. But it is not enough to have trained educators alone. “It is necessary to have medical professionals involved in these training programmes. Educationists alone will never be able to build a comprehensive intervention plan for these children,” he said, adding that the whole infrastructure should include human resource development.
He stresses that it is not education that matters but overall intervention. “We should be talking of (a) multidisciplinary approach than (an) educational approach,” he said. “This is a scientific concept accepted all over the world. What is happening in Sri Lanka is ‘working alone’ without any intercommunication or common goal. These children need individualised assessment, planning and intervention.”
“We have a system, but it is not strong enough,” he said. “We need social security or a proper legal system. Parents of autistic children have many grievances and problems in bringing their children up,” he said. Dr. Damsinghe goes further by saying that according to the newer brain theory called Neuro-plasticity, the human brain has the capacity and power to overcome any damage, provided that the proper intervention has taken place at the proper time at the proper intensity. “Working on this principle would deliver better results for these children. In spite of that the outcome ratio is not one to one, that is to say when one works with these children for hundred times the outcome may be thirty percent or less. This should not be discouraging but it should really be encouraging,” he elaborated.
*name changed to protect identity.
By Raisa Wickrematunge
Rivi is five years old. He loves the computer, making paper boats and reading. He could be any other curious toddler, but Rivi was diagnosed with autism at just two and a half years old. His mother, professor Amala de Silva from the Economics department at the University of Colombo, shared what it is like to find out that your child is different, at a panel discussion on autism. She described her reaction as initially ‘thunderstruck’ then upset, ‘what does this mean for my boy- his present and his future?’ but also puzzled, because Rivi seemed to have nothing wrong with him. At 11 months old, he had begun speaking a few words. When he was 1 year old, he had a bout of flu, and when his father returned from his business trip, Rivi could no longer say ‘thaththa.’
At first, de Silva listened to mothers who told her that boys sometimes started talking late. But she knew something was wrong. When Rivi was two, she took him to get his hearing tested. To her surprise, Rivi was not hearing impaired, as she had supposed. After consulting several specialists, she discovered that her son had autism.
At first, de Silva received a flood of support, but also advice that left her feeling overwhelmed. Everyone wanted to provide guidance, including advice on religious rituals that might help. Some also advised her to go overseas, where the treatment was better. In the end, she decided on straightforward therapy. Rivi went to several preschools, including Logos nursery, where Rivi interacted with normal children, but also spent time at a special resource centre. He has a speech and reading therapist as well. Rivi now has a vocabulary of 200 words, knows the alphabet and can count from 1 to 15. He spends much of his time playing computer games or watching videos on YouTube.
“I am lucky,” de Silva said, speaking of the support she had received from family and friends that had enabled her to stay in the country. However, she is worried that Rivi will not be able to have educational opportunities in the future, due to his special needs. She dreams that one day Rivi will be able to learn, work and live a fulfilling life. She also called on the state to do more to take care of children and adults with autism.
Professor Hemanmali Perera from the Department of Psychological Medicine at the University of Colombo notes that diagnosed cases of autism are on the rise. A study conducted in Sri Lanka found that one in 93 children were autistic, although this research was not representative of the whole island. Prevalence of autism is rising not just in Sri Lanka, but worldwide, she said. The popular idea is that there is an autistic ‘spectrum’ with children being either low or high functioning. High functioning children were often more skilled but were impaired interms of social skills.
Both genetic and environmental factors can contribute towards autism, Perera revealed. Worryingly, many of us have genes that could contribute to having an autistic child without knowing it. But all is not lost- the key lies in early diagnosis. Although it was first thought autism could only be diagnosed at around three years, it has been proven that children can be diagnosed when they turn one, and the earlier the better. So how would one teach a child like Rivi? With scheduled tasks and lots of visual and verbal cues, says Victoria Liyanage, former principal of the Ceylinco School for Autism. Tailoring lessons to a child’s specific skill set is also important, hence the need for individual attention, she said. “Do not put an autistic child into a big group at once,” she advised. Giving step by step instructions and providing rewards was also important, she said. This is because earlier diagnosis can allow for special training, and could lead to a better adjusted, higher functioning child, Perera said. Raising an autistic child is a daunting task, because many children continue to face difficulties even as adults. As de Silva pointed out, educational opportunities for such children also dwindle as they age. But with early diagnosis and patient, constant treatment, a child like Rivi can hope to lead a fairly independent, fulfilling life in the future.