I knew there was something not quite right with my ten-year-old son Tarun. He was very aloof, did not want to play with children his age, and seemed to be always preoccupied with puzzles. He had good vocabulary but his use of language was a little unusual. What caused me concern was his face .It was almost devoid of any expression. He never smiled or hugged me when I got back from work. Maybe it was so because he spent a lot of time alone with the maid. I felt guilty.
I took my son to six different specialists. Six times I was told, with varying degrees of hostility, that I was imagining things and inventing scenarios. On finding the seventh expert, who observed my child for exactly five minutes, I finally got the diagnosis. “Your son's behaviour falls within the Autism spectrum and is suggestive of Asperger's Syndrome.”
While the Hindi film Tare Zameen Par made dyslexia a household name, My Name is Khan created awareness about a lesser-known disorder: Asperger's Syndrome. What is it? How does it impact the life of the individual? What can be done about it? This article is an attempt to answer these questions.
Asperger's Syndrome (AS) is a part of a group of conditions called autism spectrum. The term refers to a range of developmental disabilities that includes autism as well as other disorders with similar characters but in different combinations and with ranging degrees of severity, i.e. two children with the same diagnosis can exhibit a wide range of skills and abilities. As a result, terms such as “low functioning”, “high functioning”, “autism tendencies”, “pervasive developmental disorder” and others are often used to describe children whose behaviour falls within the spectrum.
Children with AS will display some symptoms of autism in quite a pronounced way. They may engage in obsessive routines, odd speech patterns and other peculiar mannerisms but are less affected overall. They display an unusual sensitivity to sensory stimuli, e.g. they may cover their ears to block out sounds in the environment or they may prefer to wear clothing made only of a certain material or avoid eye contact.
AS is characterised by poorly impaired social skills. In spite of having normal to above average intelligence and language development, children are unable to communicate effectively with others and have poor coordination. They are sometimes described as active but odd, they tend to relate in a narrow way. Their activities are usually centred on their needs and peculiar interests. They have few facial expressions and have difficulty in reading the body language of others.
A puzzling feature of individuals with AS is their inability to comprehend what friendship is all about. Most are either indifferent to the idea of friendships or have no idea how to make friends. They do not realise that their behaviour causes the challenges in their relationships. Adults with AS have trouble demonstrating empathy for others and social actions continue to be difficult.
People with AS are very rule-oriented. They can learn by rote basic rules like ‘look at the person you are talking to', but they tend to apply the rule inflexibly, staring too fixedly while talking. There was an interesting case with one of my students. A ten-year-old child with AS was taught to kiss. He would kiss family members and strangers alike. So, he was taught the rule, ‘you can only kiss people at home'. This worked fine until one day when the plumber came home to fix the leaking tap!!
There is no a “typical” or prescribed treatment as behaviour patterns and problems differ from child to child. But a thorough “psychological” evaluation with emphasis on social development by an experienced professional is required. This includes past and present problems in social interactions, favourite activities, unusual habits and preoccupations causing concern.
Early intervention involving educational and social training is recommended as the child's brain is still developing. One needs to remember that AS, unlike the common assumption, is neither caused by emotional deprivation nor the way a child is brought up. It is a neurobiological disorder whose causes are not yet understood.
(The writer is an author and special educationist)
