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Autism: The need of the day is not only compassion but awareness
By Smriti Daniel
For any couple, discovering that their child is different – emotionally, mentally or physically – from other children can be quite a blow…one that takes its toll not only on their dreams but on their relationships, finances, emotional well-being and on their social standing as well. Despite the enormity of these challenges, today parents all over Sri Lanka are stepping forward with determination to learn how to better support and nurture their ‘special’ kids, in this case children who are autistic.

“Autism is a very misunderstood disease,” says Dr. Patrick Rydell Ed.D., CCC-SLP, a specialist in the field of communication disorders for 24 years now. Not only are its causes as yet unidentified (though genetics is believed to play a large role), but those with Autism Spectrum Disorders (ASD) can range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behaviour. Dr. Rydell explains that ASD is far more common than what one would expect, adding that studies reveal that worldwide ASD occurs in 1 in 250 births.

Parents are usually the first to notice unusual behaviour patterns in their offspring. For instance, explains Dr. Rydell an infant might seem unusually unresponsive or prone to focusing intently on one item for long periods of time.
“The first signs of an ASD can also appear in 2 to 2 1/2 year old children who seem to have been developing normally,” he says. For parents on the lookout, it seems obvious that the moment a babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong.
For many families this discovery marks the beginning of a long and frustrating struggle.

A lot of people view ASD as being a behavioural disorder,” says Dr. Rydell, adding that “these children are thought of as being intentionally naughty.” Such beliefs only translate into strict “disciplining” of the child, a reaction that does nothing to help the autistic child adjust his or her behaviour. “People see it as a social stigma,” he explains, “and so will try to keep their children indoors and out of sight.” This in turn only makes it increasingly difficult for the child to understand and adapt to the demands of society. Understandably, the need of the day is not only compassion but awareness.

In simply coming forward to address the issue, instead of ignoring it, the first step has been taken. The next is to maintain a consistent, well thought out treatment programme. Dr. Rydell believes firmly that with support and care, autistic children can “lead full, happy lives as contributing members to society instead of being outcasts”.

Dr. Rydell who is in Sri Lanka at the request of The Disability Studies Unit of the Medical Faculty in Kelaniya University, comes as a Senior Specialist through the United States – Sri Lanka Fulbright Commission. He is the first such speech and language specialist to be brought down and his visit happily coincides with another first - the laying of the foundation stone for a Speech and Language Department at the University of Kelaniya.

His visit has been made possible by the donations – in time, effort and money – of numerous individuals and institutions. Playing a key role in making the series of workshops possible is the Paediatric Psychiatry Unit of Lady Ridgeway Hospital. The teachers of the National Institute of Education and the Public Health Bureau have also been extremely supportive and accommodating, reveals Dr. Rydell.

The workshops already conducted provided an introduction to the SCERTS model - a comprehensive, multidisciplinary framework designed to enhance the communication and socio-emotional abilities of young children with ASD. The acronym "SCERTS" refers to Social Communication (SC), Emotional Regulation (ER) and Transactional Support (TS).

In the SCERTS model, it is recognized that the most meaningful learning experiences in childhood occur in everyday activities. This translates into efforts being made to support the child's development across a wide variety of partners (e.g., parents, brothers and sisters and other children) in everyday routines in a variety of social situations. “We’ve put in over twenty years of developmental research and clinical experience into it,” Dr. Rydell says describing the model that has met with positive feedback all over the world. SCERTS has, however, only recently been printed as a manual, making it “as brand new in the U.S as it is here in Sri Lanka.”.

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