Major campaign to create awareness on autism launched  By Kumudini Hettiarachchi The white envelope looked like any other. But the invitation enclosed therein was distinctly different – it was a simple jigsaw puzzle sending out a strong message, similar to the campaign launched on Tuesday. While the invitation said, ‘Let’s piece together the complexities of [...]

The Sunday Times Sri Lanka

Catching those tell-tale signs


Major campaign to create awareness on autism launched 

By Kumudini Hettiarachchi

WHO Representative in Sri Lanka Dr. Jacob Kumaresan calls for support for families with children with autism as (from left) Consultant Paediatrician Dr. Samanmali Sumanasena; Health Ministry’s Deputy Director-General (Non-communicable Diseases), Dr. Champika Wickramasinghe; CDB Managing Director & Chief Executive Officer, Mahesh Nanayakkara; and Consultant Child Psychiatrist Prof. Hemamali Perera look on. (Below) The unique invitation. Pix by Amila Gamage

The white envelope looked like any other. But the invitation enclosed therein was distinctly different – it was a simple jigsaw puzzle sending out a strong message, similar to the campaign launched on Tuesday.

While the invitation said, ‘Let’s piece together the complexities of autism’, the event titled ‘Act early for autism’ saw the Autism Awareness Campaign being set in motion by the Sri Lanka Association for Child Development (SLACD) and the Citizens Development Business (CDB) Finance PLC.

The messages highlighted over and over again at the event titled ‘Reaching out with care to children with autism’ at the CDB auditorium in Maradana included, ‘The signs of autism are so subtle they can often go unnoticed’.

So there will be a volley of radio and TV commercials giving in small and easy-to-understand doses what the early signs of autism are to enable not only parents but also teachers and even relatives to seek early intervention for these children.

“We plan on rolling-out a comprehensive programme to create awareness amongst all Sri Lankans,” said Project Chairperson at SLACD and Consultant Paediatrician Dr. Samanmali Sumanasena, urging the detection of autism early so that the potential of these children can be realized.

Reiterating that if autism is detected in a child before  the  age  of  three,  there  will  be  positive impacts  on  the  child, improving  cognitive,  behavioural  and inter-personal development dramatically, Consultant Child Psychiatrist Prof. Hemamali Perera of the SLACD said that it is vital to give these children a chance to grow.

A research conducted in Sri Lanka some time back indicates that 1 in 93 children and more boys than girls are affected by autism. With the annual live birth rate in the country being 380,000, this means that about 3,800 children will be born with autism each year.

Autism is a developmental disorder in which the development of the brain gets affected from a very early stage. Known as a ‘neuro-development’ disorder, the fact that it is not a disease and thus cannot be cured was underscored at the event. This is why early intervention is essential.

“Let’s say these children’s brains are hard-wired,” said Prof. Perera, adding that they lack social skills. If there is no early intervention, they remain greatly restricted.

With autism falling into a spectrum, the intensity of the common clinical features that determine autism and the degree to which they affect the child’s functioning as an individual will vary. At one end will be severely-affected children who would be intellectually-impaired and may never develop language and may even have other neurological disorders such as epilepsy. At the other end will be children who are intellectually normal or even superior who will be dubbed ‘high-functioning’. They may have savant skills in spheres such as music and art.

The difference between a typically developing child and a child with autism is not in the external appearance but in the functioning and the behaviour. The differences are mainly in social communication, interaction and behaviour.

This is why the ‘alerting’ messages in all three languages of Sinhala, Tamil and English spread to every nook and cranny of Sri Lanka, will include the following features and symptoms of autism:

n Delayed speech development in a child

*Social language regression in a child under 18 months old

*The child not making eye-contact

*An obsessive focus on a single object

*Repetitive behaviour

*Preference to play alone rather than with others

*If there is a feeling that “something is wrong” with a child that needs to be checked out

The principles in the management of autism are a multidisciplinary team and lifespan approach, according to Dr. Sumanasena, and parents play the most important role in the detection of autism and thereafter home-based early interventions.

Launched to coincide with the CDB’s 20th anniversary, the Autism Awareness Campaign is the flagship corporate social responsibility project of the company. To ensure sustainability, the setting up of an Autism Trust Fund is on the cards.

Pointing out that parents play a vital role in recognizing autism early and seeking help, CDB’s Managing Director and Chief Executive Officer Mahesh Nanayakkara was quick to stress that this is not happening in Sri Lanka due to the lack of public awareness. As such the CDB hopes to create awareness to encourage early detection and timely intervention.

Urging that the country  needs ‘champions’ to take up the cause of children with autism, the World Health Organization (WHO) Representative in Sri Lanka, Dr. Jacob Kumaresan said that there is a need to support these families.

These children should not be considered a burden but allowed to reach their full potential, he said, citing the example of a father in America who set up his autistic son and a few of his friends in a business in his garage, utilizing their repetitive skills. It was a car-wash venture which turned out to be very successful.

The SLACD set up in 2012 is the first multi-disciplinary professional association in the country dedicated to child development. With its members comprising doctors – paediatricians, child psychiatrists, paediatric neurologistd and general practitioners – clinical  psychologists,  therapists,  social  service  officers,  teachers  and  special educationists, many are the activities it has undertaken over the years to turn the spotlight on autism.

In 2014, while the Health Ministry launched the National Programme for Children with Special Needs with autism being a component of it, a research and training pilot project was carried out for Medical Officers of Health (MOHs), midwives and pre-school teachers in six MOH areas in the Gampaha district. Funded by the WHO, the training was for the detection and referral of children with special needs for early screening and intervention. It was implemented by the Health Ministry, with the know-how being provided by the SLACD.

Hotline for advice

The hotline: 011-7490000 is from where the public can seek information on autism and when required be referred for specialized services in the districts where they live.

A Handbook on Autism, meanwhile, has been published by the premier Lady  Ridgeway Hospital for  Children to assist the Autism Awareness Campaign.

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