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Autism in India

I was visiting a summer camp run by a friend. The specialty of this camp was that there were a few kids with autism among the other typically developing kids. As a researcher, I was curious to understand the dynamics of such an inclusive environment. It was a hot summer day and most children at the camp were indoors playing or drawing and one little girl came to me to talk. She was curious as to if I were their new teacher. After a brief talk, she started introducing me to all her friends and when she came to a boy sitting on the sofa deeply engrossed in a book, she stopped.

She whispered to me, "He never plays with us or talks with us. He keeps looking at the same picture books again and again. I think he doesn't even know how to speak or play." The boy she was talking about had autism and he would probably be classified a high functioning child in the autism parlance.

Autism is a developmental disorder of neural origin characterized by lack of social interaction, poor verbal and non-verbal communication and stereotyped interests. Recent studies in the US indicate that the prevalence rates are at about 1 in 150 individuals. Going by these numbers and assuming that prevalence rates don't vary across countries, we can reasonably estimate that there should be approximately 2 million individuals with autism in India. However, only a very small percent of them have been diagnosed.

Autism is relatively a newcomer to the spectrum of developmental disorders in India. While there is a lot of awareness and facilities are available for children with cerebral palsy (CP), hearing or visual impairments, the awareness about autism, even among medical professionals, is just emerging.

Recently, Zee TV, one of the premier television channels in India aired a soap opera called 'Aap Ki Antara'(1) which portrays a girl with autism. The show did much to increase awareness of autism in the country. Action for Autism(2) is one of the premier organizations in India that works on creating awareness and providing services for individuals with autism. They ran a helpline after the show, and received many questions from parents, even from the remotest parts of the country, who thought that their child might have had autism. This reinforces the conjecture we made above, namely that we have not even seen the tip of the iceberg yet.

Autism is considered tricky to diagnose. One can misdiagnose the symptoms for anything from being a hearing impairment to attention deficit or thinking that s/he is just a slow child. By the time parents receive the correct diagnosis and look for interventions for their child, they have lost much valuable time. Early intervention is considered critical in autism - the earlier a child receives interventions, the better the results will be.

Diagnosis is just giving the right name to the condition. The larger issue is how do we support and make life easier for the children and their parents. I recently attended a meeting of a group of parents whose children had autism. Parents had a range of questions about their children, their major worry being the child's independence in the future. For instance, one mother was worried if her child would be able to cook when she grows up. She was even suggesting that they should teach it as a subject in her child's school instead of overwhelming the children with subjects like English and Mathematics. Another parent was worried if his son would get a job, and if not, who would take care of his financial needs? These are some questions which scientific research does not look deep into. The research effort has so far remained concentrated on diagnosis and early intervention.

Before going on to talk about autism in adult life, let me digress briefly to discuss schooling for a child with autism. In India, there are very few schools that specifically cater to the needs of autistic children. Most of the schools house children with various developmental disabilities including autism, CP, Down's syndrome, and learning disabilities in the same class and the notion of inclusive classrooms is quite rare. Even if there are inclusive classrooms, it becomes difficult for the teacher to manage more than one child in a mainstream class.

The mainstream school curriculum in India is extremely demanding and the syllabus is quite rigid. The child has to finish the prescribed syllabus for a subject within an academic year and there is no option to carry it over to the next year. So, many of these special schools do not follow the mainstream curriculum and are affiliated with the National Institute of Open Schooling(3). This system offers many vocational courses and the flexibility for the learners to pick the courses they want and learn at their own pace.

Let us turn back to the major concerns of parents: Will their children be able to live independently once they grow up? Will they get a job? Will they have a normal social life like everyone else? And so on...

Autism is a lifelong condition. The situation definitely improves with proper intervention, but it does not go away. If we have two million children with autism today, we will have two million young adults with autism ten to fifteen years down the line.

We can either treat them as someone with disability, or make effective use of the skills and abilities of these young individuals and let them lead an independent life like everyone else. Most children with autism have some stereotypical interests and they usually excel at it. They often do very well in extremely repetitive jobs or tasks that require extreme attention to detail. Both these faculties are part of their cognitive profile.

For instance, the father of a child with autism set up a company called Specialisterne(4) that considers the abilities of individuals with autism as its strength. Three-fourths of its employees are on the autism spectrum.

There is one trend that is very evident in autism when compared to other developmental disorders. Most of the support groups and innovative ideas come from the parents of the children. My friend who was running this summer camp was also the mother of a child with autism.

While this little girl found the boy's obsession about picture books annoying, my friend thought it was his strength. She was wondering how best to leverage this obsession to teach him how to cross the road. There was another teacher there at the camp, who thought this boy will grow into a great philosopher or scientist as mundane, worldly things did not hold any attraction for him.

The cognitive profile of autism is different. Most of us are like the little girl, quite rigid about our notions of what is appropriate and inappropriate and view autism as a disability. Some lateral thinking and breaking of conventions is definitely needed to understand that autism is a way of being and to let individuals with autism perform at their best.


References
(1) Action for Autism, http://www.autism-india.org/index.html, Last accessed 25 Feb 2010

(2) Shows - Aap Ki Antara - Zee TV, http://www.zeetv.com/shows/aapki-antara.html, Last accessed 25 Feb 2010

(3) National Institute of Open Schooling, http://www.nios.ac.in/, Last accessed 27 Feb 2010

(4) SPECIALISTERNE - Sense & Details, http://www.specialisterne.com/, Last accessed 27 Feb 2010
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