Autism: It shouldn’t be a lone battle for parents

With the United Nations designating April 2 as World Autism Awareness Day from this year, Kumudini Hettiarachchi discusses what steps have been taken in Sri Lanka to tackle this developmental disability.

They are in a world of their own, a silent world, it seems difficult to penetrate. They have problems talking to you, most probably they will not look you in the eye, they may keep repeating the same thing or they may sit in a corner, with a plaything like a bicycle, not riding it but keeping it upside down and spinning the wheel over and over again.

But penetrating their world, the world of the autistic child, is a must and for that early screening and detection are vital, stresses Professor Hemamali Perera, Prof. in Psychological Medicine, Faculty of Medicine, University of Colombo, explaining that acknowledging the importance of autism, the United Nations has designated April 2 as World Autism Awareness Day from this year.

The Maharagama Centre that provides special guidance to 10 autistic children (file photo)

“Autism has overshadowed all other developmental disabilities in children put together. Early diagnosis and treatment are vital as it increases the probability of a good outcome, whereas delayed intervention compromises a child’s quality of life. It is also imperative that the health and educational interventions have to be highly specialized, structured and intense and target multiple domains of developmental deficits,” says Prof. Perera who is also Consultant Psychiatrist, Lady Ridgeway Hospital.

This is crucial as the incidence of autism has rapidly escalated in the last decade, The Sunday Times understands and a National Programme is now being developed for community screening and early identification and intervention.

“It is clear that autism is present in a far greater number of children than was initially thought. The health and education services in Sri Lanka are only just beginning to wake up to this reality, but ignorance is still widespread among health professionals and the public,” says Prof. Perera. “Autism is a highly disabling condition with life-long functional impairments and a significant burden of care.”

For Sri Lanka, the best options lie in detection of autism as early as 18 months and appropriate intervention to reduce the severity of impairment, it is learnt and the responsibility in this regard falls mainly on the paediatric and primary healthcare services.

Prof. Perera stresses: “Parents’ concerns are reliable indicators that should not be dismissed. Anticipated development of community paediatric services is a valuable opportunity to set up multidisciplinary teams to provide early screening, recognition and intervention. Home-based interventions have proved effective with the participation of mothers trained to carry out structured programmes of work. Finally, scientific research into identifying the preventable environmental causes of autism that is relevant to Sri Lanka is of immense importance.”

Another factor that needs to be considered and developed is a focused education system the autistic child can be absorbed into after early intervention. Education Minister Susil Premajayantha is very keen to develop this sphere, it is learnt.“There is a small centre at Maharagama, where 10 autistic children are under three specially-trained teachers,” said the Special Education Unit Director H.P.N. Lakshman adding that they will be able to get into mainstream schools soon.

According to him a joint programme among the education-health-social service officials is underway to screen children for autism in the 6,000 primary schools in all nine provinces. Two schools in each province already have special classes for autistic children, said Mr. Lakshman adding that some teachers are being trained in the special education methods needed for these children, while all teachers are being made aware how to identify autistic children, by the NIE and the relevant education authorities.

The crucial message is that the battle against autism and getting these children integrated into society is not a lone battle of the parents. It has to be fought not only by parents but also doctors and teachers.