The special touch matters

"WHEN I told the doctors that my son's milestones were delayed, they pronounced him brain damaged. This was when he was just a year and a half old! "He is not going to be okay. Don't ask any more questions", they told me curtly. I took this up as a challenge. Giving up my career as a chartered accountant, I began to work with my son. For seven years, I held a monologue with him. There was no reaction. A few words followed later", says Ramamani Ravi. Her son, now 15, was diagnosed as a child with autism only when he turned five. But Ramamani's struggle began much before. If the "invisibility" of a handicap such as autism is one problem, the other is the readiness with which some experts misdiagnose it as mental retardation or schizophrenia. Mythili Chari and Vyjayanthi of the Institute for Remedial Intervention Services (IRIS) say that thanks to misdiagnosis, children with Asperger's syndrome are often treated with drugs for their asocial behavior further compounding the problem. Autism is a word used to describe a disorder in children who lack social and communication skills. Children affected by the related Asperger's syndrome, though late in talking, talk fluently by the age of five and are often "high functioning" or gifted. However, they completely lack social skills and are perceived as "rude". IRIS runs a website (www.autismindia.com) that provides detailed information. Parents and special educators whom I met during and after an International Conference on Autism and Asperger's Syndrome organised by IRIS and the Enhanced Auditory Rehabilitation Services, Massac-husetts recently, stressed the need for more awareness among pediatricians, psychiatrists, school authorities and the general public. This, would facilitate early diagnosis and intervention. "My child wouldn't turn to look when I called out to him. I put this down to the fact that I was a working mother. Even when my son was diagnosed eventually as having autism, I received no counselling", says Akila who now sends her son to a regular Montessori school. "As a mother, I knew that there was something wrong with my son from the time he was six months old. He would not cry even when he had colic.''

``Once a child is diagnosed with autism, every second counts. I spend the day with my five-year old son at a regular montessori school. I mediate between him and the other kids. It has helped him a lot" says Shanta. Like most other parents and special educators, Shanta feels that they key to dealing with children who have autism is integration into a mainstream school. But not every parent is as fortunate in finding a regular school that is so open. "I sent my son to the pre-KG class in a regular school and explained to the authorities that children like my son have to hear normal speech. After a year, they sent him out saying that he was not repeating rhymes. Later, I enrolled him in Swabodhini, a special school. When he turned ten, he studied at Gujarati Vidyalaya. Most of his learning happened there, with peers," says Ramamani Ravi.

Institutions like IRIS play a crucial role in sending children with autism to mainstream schools. However, one cannot overlook the need for special schools with a trained team of teachers and occupational therapists. Sankalp, started in 1999, is one such school. Run by Sulata Ajit, Lakshmi Krishnakumar and Subashini Rao, the school, based in Annanagar, uses a novel method to integrate children with autism, Down's syndrome and other problems. Sulata Ajit says, "Since Sankalp also functions as a regular play school, children with learning disabilities spend a few hours each day with children from the play school. This is apart from the separate session we have for them." Swabodhini, another special school in Mylapore, works with children with autism, Attention Deficit Disorder and Down's Syndrome. Apart from academics, children are given speech therapy, physio- therapy, computer instruction are receive experiential learning. Director, Radha Ganesan stressed the need for regular schools to open up to special children and for the creation of a separate curriculum for the learning disabled. Parents must give priority to a special child. Having a child with autism is life-changing. After the initial period of coming to terms with reality, there is no respite from caring for the child.

Social acceptance of children with autism still remains a dream. Lekha, a parent with a three year old son who has autism, says wistfully, "My son should be accepted as a normal child. That is my hope for the future." Having a child with autism raises questions about normalcy itself. "Children with autism are beautiful children. When we accept a badly behaved normal child, why can't we accept a child who does not intend any harm?", Shanta asks. A question touches the heart of the matter. (Some names have been changed to protect identity.)

K. SRILATA

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