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From the Daily News -
Autism on the rise in Sri Lanka

by Ivan Corea

Education - all have a right to it

There are those who have seen the classic film, the 'Rain Man' with Dustin Hoffman and Tom Cruise. The film focuses on the character played so brilliantly by Dustin Hofman - an 'Autistic Savant' who is gifted in mathematics. But this is only one aspect of Autism.

Autism is a very large spectrum. Not everyone is blessed with the gift of Mathematics, Art or Creativity. There are those who are mildly Autistic, others are very severe. Some Autistic people who are high functioning Autists have the gift of speech others don't talk at all. There are Autistic children who have communication disorders - they need help and support - these children need specialist speech therapy.

Autism is a neuro developmental disorder, it is a lifelong disability, people with Autism have a triad of impairments - social interaction, social communication and imagination.

Autistic children and adults may or may not have speech, quite often the speech is delayed, they make non-speech sounds (e.g. mmmmmm) echolalia - mimicing words without understanding what the word means - they may mimic words from the TV for example.

Lack of eye contact, they appear to be unaware of people around them, no real interaction with peers - in the classroom or at home, sometimes they treat people as objects, parallel play rather than playing with children, sometimes lack of imaginative play.

They don't like being cuddled or being picked up, hand movements, flapping of hands especially when they are over stimulated or particularly excited about something, spinning, balancing, sometimes they might tiptoe when walking, repetitive behaviour - they might re-wind a video and watch it several times - over and over again, lining up things like toys, self-injury - some children bang their head on the wall, they do not like a change of routine.

Autistic children and adults don't like being touched, they might not like certain textures or sounds, they might cover their ears at very loud noises, they tend to blank out certain things, they appear to be uncomfortable at very extreme temperatures, they are either very passive or very active sometimes even hyperactive.

Some Autistic children and adults love drawing, some can be musical, like numbers - mathematics, good memory, skilled at using computers, computer games, using complex video/audio equipment around the house or in the office or in school.

Autistic children and adults may get up several times in the night - parents suffer from sleep deprivation. Serotonin levels may be high, some children suffer epilepsy, others may have dyslexia, dyspraxia. Many children suffer from bowel problems - there seems to be a connection between a leaky gut and Autism. Some may suffer from Irritable Bowel Syndrome.

What are the causes of Autism?

Scientists are still divided as to the causes of Autism. Parents, Carers and Autists have not been given a definite answer whether Autism has been caused by the MMR vaccination, whether there is a genetic disposition, whether it is caused by foetal distress at birth or whether environmental factors play a role where Autism is concerned. We need answers. We also need public services in health, education, respite care and specialist speech therapy for all people with Autism and Asperger's Syndrome.

The British author, Mark Haddon who won the Whitbread Prize has brought out a new fiction book called 'The Curious Incident of the Dog in the Night-Time' published by Double Day books in the UK.I would urge Sri Lankans to buy this book if you want to know what goes on in the mind of an Autist. The story line:

'Christopher John Francis Boone knows all the countries of the world and their capitals and every prime number up to 7,057. He relates well to animals but has no understanding of human emotions. He cannot stand to be touched. Although gifted with a superbly logical brain, Christopher is Autistic. Everyday interactions and admonishments have little meaning for him. Routine, order and predictability shelter him from the messy, wider world.

Then, at fifteen, Christopher's carefully constructed world falls apart when he finds his neighbor's dog, Wellington, impaled on a garden fork, and he is initially blamed for the killing.

Christopher decides that he will track down the real killer and turns to his favourite fictional character, the impeccably logical Sherlock Holmes, for inspiration. But the investigation leads him down some unexpected paths and ultimately brings him face to face with the dissolution of his parents, marriage. As he tries to deal with the crisis within his own family, we are drawn into the workings of Christopher's mind.'

And herein lies the key to the brilliance of Mark Haddon's choice of narrator: The most wrenching of emotional moments are chronicled by a boy who cannot fathom emotion.

The effect is dazzling, making for a novel that is deeply funny, poignant, and fascinating in its portrayal of a person whose curse and blessing is a mind that perceives the world literally.

'The Curious Incident of the Dog in the Night-Time' is one of the freshest debuts in years: a comedy, a heartbreaker, a mystery story, a novel of exceptional literary merit that is great fun to read.

Mark Haddon is a writer and illustrator of several award-winning children's books and television screenplays. As a young man, Haddon worked with Autistic individuals. He teaches creative writing for the Arvon Foundation and at Oxford University.

He lives in Oxford, England, with his wife and son. The Autism Awareness Campaign UK highly recommends this book - it is a fascinating insight into the life and times of an Autistic boy.

Autism on the increase

Autism is on the increase - in Sri Lanka they say there are 38,000 Autistic children. Quite often Autism is confused with mental illness due to cultural issues many of these children are kept at home out of sight. The parents become the carers for their lifetime.

There are no schools, hardly any strategies and unlike countries like the United Kingdom no effort to integrate these children into mainstream schools. In Sri Lanka there is a total lack of understanding and even Heads of Schools haven't really been trained in strategies to deal with Autistic children in a mainstream school setting.

It is going to be a huge issue not just in Sri Lanka but across SAARC you find thousands of Autistic children from India to the Maldives. What action have SAARC Leaders taken to examine this serious health and education issue?

Autism is a time bomb waiting to happen in Sri Lanka. Parents have no information and there may well be Autistic children in mainstream schools who have not been diagnosed as such.

Our recommendations to the Government of Sri Lanka:

To set up and fund an Autism Foundation in Colombo - which will give help and support to parents, carers and Autists in Sri Lanka; undertake research into the causes of Autism in Sri Lanka; help with the dissemination of information on Autism and Asperger's Syndrome in English, Sinhala and Tamil; provide advocacy services for parents, carers and Autists.

To launch a data collection project right across the island.

To set up an Autism Committee consisting of health, education, social service professionals, the voluntary sector/charities/NGOs - joint working and joined up thinking is absolutely crucial for all Autistic people, they can also look at good practice and make recommendations.

To introduce tough new legislation in Parliament similar to the Disabilities Discrimination Act in the United Kingdom to protect the rights of all Autistic people in Sri Lanka; introduce new employment laws giving access to the world of work.

Introduce a special examination and a special qualificiation for Autistic people who may or may not be entered for GCEs, A levels; introduce special assessments for Autistic children who are in mainstream schools.

Open more Special Schools wherever the need arises.

Encourage inclusion in mainstream schools - both in the Government sector and in private schools.

Introduce compulsory disability training for all school principals and staff.

Introduce disability awareness - including Autism to all mainstream school children.

Introduce disability units including a study on Autism in all teacher training courses including teacher training degree courses in universities.

Appoint a Disabilities Minister who will also look at the needs of Autistic children and adults across the Disability Spectrum.

Launch an Autism Awareness Week in Sri Lanka.

We recommend that the Ministers of Health and Education visit other countries such as the UK and liaise with Ministers looking at how these countries provide public services for Autistic people also looking at good practice in other countries.

Request funding and expertise from other countries to help set up the Autism Foundation and Autism Projects in Sri Lanka.

Organise an Autism Conference in 2004 in Colombo aimed at raising awareness through seminars, workshops - for health, education and social services professionals and the voluntary sector - we are prepared to bring a team of experts from the United Kingdom- provided the Government of Sri Lanka funds their visit.

Launch a recruitment and retention campaign to attract special educational needs teachers and specialist speech therapists right across Sri Lanka.

Encourage new ways of thinking where Disabilities and Autism is concerned - education from infant school to univesity is a key area, employment is another area, we also need a debate on Autism and the Elderly.

We urge the Ministry of Health to introduce the CHAT system of early diagnosis for Autism - initiated by world Autism expert Dr. Simon Barry Cohen of Cambridge University.

We urge the Ministry of Education to develop educational strategies in mainstream schools for children and young people with Autism and Asperger's Syndrome.

We appeal to the Government of Sri Lanka to provide more funding for public services in health, education, specialist speech therapy and respite care for people with Autism and Asperger's Syndrome.

We urge the President and Prime Minister of Sri Lanka to make a policy statement on Autism and reach out to the Autistic Community in Sri Lanka. Autistic people in Sri Lanka have a right to public services in health, education, specialist speech therapy and respite care across the island.

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