National policy and awareness programs for autistic children vital

By Kurulu Kariyakarawana

Mr. and Mrs. Premathilaka Perera had their only child, a baby boy born on November 18, 1995. Due to the lack of oxygen the baby was born underweight at a kilogram and 300grams. He was given oxygen through out the first day and then kept in an incubator for a week before being discharged from hospital. Although it was like this at the beginning the infant was growing up to be normal child until his first birthday. Trying to grasp a word or two from his parent's vocabulary, Malintha was an active child from his early days. It was only when he was one- and-a- half years that the parents realised their son was only using single words to communicate. Words such as Amma and Thaththa. Their suspicions turned into fear when Malintha quitted speaking all together as soon as he turned two.

As parents are won't to do, Malintha's parents took him to the doctors, then to a specialised doctor and to many other medical experts to only learn that their son was suffering from autism by birth and that there will is no permanent cure for it. They didn't know what to do next as he was growing up like a normal child but with no speech ability and had his own eccentric ways of behaviour compared to other children of the same age. The nurseries refused to accept him saying that he would not stay still but was constantly on the move, running here and there. They took him to child psychiatric specialists to understand the condition of his disorder but the only thing the doctors did was record accounts of the behaviour of their son instead of giving a single piece of advise in the right direction.

The doctors who hadn't a clue about the early training of an autism child told the parents to train Malintha in the way that they thought best. Mr. and Mrs. Perera with great difficulty trained their son to feed himself, toilette practice and many other basic practices a normal child would do by the age of six. He had a problem in walking at the beginning. He always walked on his toes and this had to be stopped immediately otherwise it would be a lifetime habit. His parents took him to the sea beach and trained him to walk properly. Malintha's mother house- trained him with basic education with reading and writing skills. Their efforts were not in vain. Today Malintha an 18-year-old youth has developed with many skills compared to other children suffering from autism. He has special skills in drawing, writing in several other languages and a special liking for basketball. Perera is a businessman who devoted his life for his son's betterment is commited to setting up a proper system for autistic children. The PAAC is currently working on a special project to set up a full fledged Care Home and Developing Centre for Autistic Children in Sri Lanka. A philanthropist in Kandy is to sell a three and half acre land for the proposed site for a very low price. The construction budget of the project of a two storied building with all the relevant facilities for the early learning environment of autistic children is estimated at Rs.381million. The PAAC which is registered with the Ministry of Defence and Department of Social Services as an organisation that would help individuals affected by autism disorders and help their families to cope with their behaviour.

An aged parent with her son who is autistic

Mr. and Mrs. Premathilaka Perera with their son on his first birthday

Giving birth to a physically and psychologically sound child is the dream of an every parent. Although a child is a gifted blessing the agony which parents go through when they have a a physically impaired offspring is beyond words. The world is developed to face common issues like hearing and visual impairment of babies at birth and also to treat certain psychological conditions. Yet there are certain psychological disorders that newborns inherit from parents or due to other medical complexities which is be common nowadays. One such common disorder is children suffering from autism at birth.

Autism is a disorder of neural development characterised by impaired social interaction and verbal and non-verbal communication and by restricted, repetitive or stereotype behaviour. This is a common disorder that can be seen in Sri Lanka and in other parts of the world. According to medical statistics the prevalence of the disorder in Sri Lanka is 93 to 1. Considering the annual birth rate it is estimated that around 3500 children are born every year with autism. And this situation is less worse compared to countries like the USA which has a birth rate of 80 to 1 autistic children a year.

The medical explanation for the disorder is that autism affects information processing in the brain by altering how nerve cells and their synapses connect and organise. How this occurs is not well understood. This is one of the three disorders in the Autism Spectrum and the other two being Asperger's Syndrome, which lacks delays in cognitive development and language and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met. The diagnostic criteria require that symptoms become apparent before a child is three- years- old.

Autism being a common disorder the measures taken by many developed countries in the world to tackle this problem at present is considerably very high. Although this disorder does not have a permanent cure , modern science has found that it could be controlled to a great extent. To develop an autistic child to the standard of a regular interactively sound person with the age needs a lot of effort. Except for a certain condition of non-verbal autistic children (who would rarely speak) the rest can be developed to a better status with the help of modern medical practices and principles being adopted by many developed countries. However, this scenario is entirely different in Sri Lanka where at least a national discussion on the specific topic is barely formulated by the competent authorities.

It is sad to learn that except for a single state- run model school and few privately run institutions to groom such children for a very high price, that could afforded only by a handful of privileged parents, not a proper system has been functioning or implemented to date. This was brought into the notice of President Mahinda Rajapaksa in 2011 by then Secretary of Ministry of Provincial Council and Local Government Dr. Nihal Jayathilaka, (who is the current Secretary to the Ministry of Health). Dr. Jayathilaka proposed a fully fledged development programme for the children suffering from autism at national level and a national committee to be set up covering a range of experts representing Ministry of Health, Ministry of Social Services, Ministry of Education, Ministry of Women's affairs and Child Development, Ministry of Finance, Ministry of Provincial Council and Local Government, Ministry of Vocational Training as well as representatives from World Health Organisation, UNCEF, Sarvodaya Movement, Carlton Pre Schools, Parent's Association of Autistic Children and National Council for the Disable.

Also a group of experts in the medical field were nominated for the committee including Prof. Hemamali Perera (Child Psychology Specialist), Specialised Doctor Neil Thalagala (Family Health Bureau), Specialised Doctor Samanmalie Subasena (Paediatric Specialist), Victoria Liyanage (Education Specialist), Specialised Doctor Anoma Jayathilaka (WHO) and Dr. Anil Dasanayake (Director Health Ministry).

Following these proposals President Mahinda Rajapaksa directed the relevant authorities to set up a Ministerial Sub Committee and instructed the Ministries of Health, Social Services, Women's Affairs and Child Development and Education to create a national policy on this. However the progress of this is program is not satisfactory enough and a national policy on autism is yet to be adopted.

Explaining the present situation the President of the Parent's Association of Autistic Children (PAAC) Premathilaka Perera said the need for a national policy on children suffering from autism is greatly felt though no solid action has been taken by the authorities. PAAC is a body that has a membership of parents of over 3000 autistic children in Sri Lanka in various age groups. Having first hand experience on autism because of his only son suffering from the disorder from birth Perera stressed the importance of establishing a national policy on autism.

According to him autistic children have never been given special consideration by the relevant authorities or official in the health sector but considered as part of the children suffering from Down Syndrome, which is totally differt. No proper education or training policies are implemented or practised for autistic children and hardly does an autistic child absorbed into the education system in the country. Because of the intricate symptoms of autism and lack of training and experience pre-school teachers are hesitant to admit children suffering from autism to nurseries or pre-schools. This is the moment an autistic child will be rejected from society for the first time and confined to a solitary life thereafter.

We spoke to Prof. Hemamali Perera Psychiatry Professor of the Colombo Medical Faculty believes that much can be done to develop a national policy and system to embrace the neglected autistic children in Sri Lanka. Compared to the programs being adopted by the developed countries worldwide what Sri Lanka has in place for the autistic children and adults suffering from autism is not satisfactory at all.

Prof. Perera said that due concern is not given to these special children although attempts had been made by various aggrieved parties to propose a national policy on this from time to time.

There are very limited number of services set up for these children and sadly no national centre for autism in Sri Lanka. However the Ministry of Health has launched a pilot project namely National Program for Children with Special Development Needs which is already off the ground. Although this project is looking at the special needs in general, a significant part is reserved for autism related issues as well.

Expressing her displeasure over the attitude of managements of pre-schools and primary schools ,Prof Perera said that all teachers are obliged to receive an autistic child in the classroom with no discrimination.

The education services should take urgent steps towards quality classroom and learning environments. One of the main issues is that the teachers are not trained for a special situations like this. Most of the autistic children can be taught in the mainstream. Except for a few extreme cases they could be trained and educated in regular schools but with special attention from the teachers. An important aspect that has to be implemented is to train teachers to cope with an autistic child in the classroom and the need for awareness programs are essential, she said.