National development Centre for ASD A Sri Lankan’s dream to fight for autistic children

Premasiri at the only building in the proposed complex 

Pix by Samantha Perera 

A group of middle-aged parents was patiently seated inside a semi-furnished hall built on an elevated ground situated in a picturesque two acre hilly land in a soothing climate and covered by shrub jungle. Their somber faces- half filled with anticipation- were suddenly disturbed with a hysterical scream let out by a grown-up young man making a demand. His father, one among the seated parents, quickly attended to his son’s need; which eventually calmed the latter down. 

27-year-old Malintha got disturbed and screamed because the programme he was listening to on a portable radio was disrupted due to an error in signal reception. The youth’s father had to intervene and fix the problem and also the child’s mood. Malintha’s odd behaviour was due to Autism Spectrum Disorder (ASD) or autism. The rest of the parents who were present at the hall had at least one or two of their offspring suffering from the same disorder. 

We went to Pilimathalawa in Kandy last week to see Premasiri Perera, who is in his early sixties. He is a former sailor and has now fully committed his time since the past two decades to his son’s well-being. He has also been struggling for the past 12 years to establish a national development centre for children suffering from autism in Sri Lanka; which is at present a much needed facility. 

Perera, who founded the Sri Lanka Parents’ Association of Autistic Children (SLPAAC)- the only organization in the country for such cause with a membership of over 3,000-explained to us how his entire life has changed after his son was diagnosed with autism about 25 years ago. Perera explained how he has since then struggled for the well being of his son as well for the others suffer from the disorder. 

“When my son was born on November 18, 1995 my wife and I were ecstatic as he was a healthy baby. But our happiness was short-lived as he was showing different signs of a growing up baby when he was nearing two years of age. We showed the baby to Psychiatrist Dr. Ranil Abeysinghe of the Peradeniya Teaching Hospital and Consultant Child and Adolescent Psychiatrist Prof. Hemamali Perera, who both diagnosed my son with ASD. Since, then our entire lives have been changed and I even retired from my job as a seaman and devoted to find a cure for Malintha,” Perera recalled. 

“We tried various clinics and centres to ultimately learn that there is neither a solid cure for this disorder nor the cause for it has been ascertained to date. Also, these development centres are mostly in the private sector and the therapists charge high fees; hence parents from an average financial background end up spending a fortune to raise their child accordingly. 

“Since good parenting with specialised treatment and training is essential to develop the mind of an autistic child, it always pressed me to establish a freely accessible development centre for these children,” added Premasiri as he went on to explain how he started the project. 

“I formed the SLPAAC in 2010 and registered it with the Department of Social Services as a non-profit gaining organisation. We didn’t charge a membership fee hence hundreds of parents countrywide with children having autistic disorder started to flock around us after getting to know about this association through a newspaper article. Later on I registered this facility this with the Ministry of Defence as a Non-Governmental Organization and started working towards fulfilling my dream. 

“My initial concept was to establish a multi-facility development centre for autistic children where they can remain permanently with one or two family members (usually the parents) and take part in day-to-day therapy, training programmes and also special education with physical and sports activities for free. For this the first requirement was a place or land with ample space,” he went on. 

“In 2014 one of the Sinhala national newspapers carried out a comprehensive article regarding my efforts aimed to have a development centre. Seeing this article a philanthropist in the Pilimathalawa precinct- Mr. K. Welianga- came forward to assist my project and agreed to provide a two and half acre land belonging to him for a very nominal price. 

“I then planned the entire project with the help of an architect (whose child is also suffering from autism) who willingly drafted the blueprint of the building complex. The building complex included ten joint houses, two workshops, two therapy centres, a gymnasium, a play area and an outdoor compound bordered to Kuda Oya canal; helpful in performing sand and water therapies for the children. 

“The ten joint houses, each house comprising four units including a living area, a bedroom, a kitchen and a bathroom /toilet in a five square perch land will be provided to 10 families selected on the priority basis and considering their financial hardships and the extreme condition of their autistic child,” Perera said. 

The project was planned about eight years ago at an estimated cost of Rs.380 million. This kind of expenditure could only be borne by the financial assistance expected from a government approved project, corporate sector backing, aid from foreign agencies or prospective personal donors and philanthropists. 

Premasiri said that this was the trickiest part during the past eight years where he had met hundreds of high ranking state officials including bureaucrats, political leaders and past Presidents, Prime Ministers and Ministers like Mahinda Rajapaksa, Maithripala Sirisena, Ranil Wickremesinghe and Sajith Premadasa who had from time to time pledged support for this project, but nothing significant has happened thus far. 

However, understanding his untiring efforts Commercial Bank had come forward in 2018 to build the one and only building that was sheltering everyone including us that day; the building was built to be used as a training centre at a cost of Rs.4 million. Discussions were also underway to build another therapy centre under the blessings of the Australian Government, which is yet to be finalised. 

“I have been to a number of places including two Parliamentary select committees in the past seeking assistance for this project. A programme of this magnitude requires national backing, but I wasn’t successful. Some government medical doctors are reluctant to support this project as most of them conduct private therapy sessions at clinics for a very high fee,” he said. 

“I have spent my entire personal wealth for my child and to make this project a success. Sometimes I don’t have enough money to buy him medicines. But I have never given up on this fight as the parent of an autistic child. Their future is bleak as we are not around to take care of them forever,” Perera said in a low voice. 

Perera, however, after a struggle of almost a decade, is having a ray of hope as the Sri Lanka Army has shown concerns in backing this project to develop it to its final expectations. “The Commanding Officer of the Gajaba Regiment in Kandy visited this land on my request and gave assurance that he would inform the matter to the senior officials at the Army Headquarters; which help I’m being very hopeful of,” he said. 

Some of the parents shared their woes regarding their children and hopes they have to make this project a reality. 

N. D. Ginasena of Thotadeniya

N. G. Ginasena, a retired Telephone Operator of Yatinuwara CTB Depot, said that his 23-year-old son Gihan Bandara is in a very difficult condition to control as the latter becomes aggressive for the slightest reason. 
“No matter how much we feed him during all three meals, if he feels that he needs to eat again- even soon after a meal- we have to provide him with food or else he would become extremely aggressive and difficult to control. Therefore, I and my wife make sure that we have a pot of rice ready at home at any given time of the day,” he said. 

“I have a second son who is a normal person. But since lately he too seems to be following his autistic brother and gets aggressive for the slightest thing. That’s why we need this centre, which gives a separate environment for our autistic son with due care,” Ginasena said. 

W. G. Indrawathie of Gampola 

W. G. Indrawathie has a 40-year-old daughter named Jeewanthi Wathsala who is suffering from autism. She said that her second daughter will never get married as she has to work and earn to look after them all. 
“My elder daughter was diagnosed with autism when she was two years old. She is a very kind child and is understanding. But if she misses her medicine she would become aggressive. My second daughter, who is 38 now, is never keen on getting married as she could not leave us. If this centre is there we could have a safe future,” Indrawathie said. 

Lalitha Padmini of Polgolla 

Lalitha Padmini says that she has a 26-year-old son who is a normal person, but her 20-year-old daughter Sujani Tharaka started suffering from autism when she was a baby. Now she has grown up to be a beautiful girl with no external physical defects. 

“She is a very loving person and likes to kiss anyone she comes across. I and my son are used to this at home. But it is difficult to take her out in the public as she would kiss any stranger with no hesitation,” Padmini said. 

Kamani Wasantha of Kiribathkumbura 

Single mother Kamani Wasantha, who is a retired post mistress, said it is with great effort that she had brought her 25-year-old daughter Chathurika Kumari up since the demise of her husband about a decade ago. 

“My daughter is very calm and quiet. She understands a lot. But it did not serve the purpose when I sent her for special education. I had to quit my job prematurely because there was nobody to look after my daughter. I wonder how she will survive one day in my absence,” Kamani said with a tearing eye.