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They also need special care and nurture Even in a city like Mumbai there are few facilities to help autistic children. Parents and teachers say it is about time things changed...Sumitra Deb Roy Autism is a neurological disorder that affects more than four million children in India today. And yet, it is not considered a disability enough to find a place in the Disability Act. Forum for Autism, a self-support group formed by about 500 parents of autistic children, has drawn up a charter of rights that an autistic child should be entitled to. The group will present it to chief minister Vilasrao Deshmukh and governor SC Jamir on Wednesday, which is World Autism Awareness Day. The charter demands that special schools teaching autistic children should be placed under the purview of the ministry of education as opposed to the social welfare ministry. Parents are of the view that due to a lack of understanding and facilities, most autistic children are either crammed into schools meant for the mentally challenged or left at home with little or no education. Studies suggest that one in every 150 children is autistic, boys being more vulnerable than girls to develop autistic characteristics. “But autism remains highly underreported,” says Reena Singh of Khushi, an early intervention centre. The charter also demands that autistic children should be entitled to exemptions that are provided to a dyslexic child. “Even an autistic child requires extra time during exams, a writer, or at least a different curriculum,” says Chitra Iyer, president, Forum for Autism. The biggest concern, however, remains the negligible number of special schools as well as vocational schools to cater to these special children. It is estimated that Mumbai has at least 80,000 autistic children, but there are only 40 special schools to teach them. There are hardly any vocational centres that can keep them occupied or help them to seek employment. “The government needs to allot space for such organisations or facilitate their existence in some way or the other,” says film director Kaushik Roy, who has an autistic child at home. Even the number of centres issuing certificates of autism is negligible. Mumbai has only one such centre at the JJ Hospital in Byculla. Parents with autistic children get tax exemption to the tune of Rs75,000. “The government needs to set up more centres. It is not always possible for a parent to come all the way to Byculla,” says Iyer. “At least all government hospitals or government-recognised private hospitals should be authorised.” Most importantly, the charter demands that there should be residential schools for autistic children. “Parents are perpetually worried what will happen to their children after them,” says Achyut Godbole, managing director of Softexcel Consultancy Services, whose 25-year-old son is autistic. The charter demands a respite care where parents of autistic children can leave them for at least a day while they rejuvenate themselves. ‘My son goes to a normal school now’.....Minakshi Sinha Every time seven-year-old Rohit (name changed to protect identity) walks up to his mother and asks for food, his mother feels a sense of relief. Rohit has come a long way since he was diagnosed with autism one-and-a-half years ago. Once a shy and socially impaired child, Rohit can now say complete sentences, button and unbutton his shirt, and draw. Autism is a brain development disorder that impairs social interaction and communication and results in restricted and repetitive behaviour. The symptoms are visible even before the child is three but are a bit difficult to detect. That is because, owing to the child’s age, parents can mistake symptoms of autism as part of the growing-up/learning process. Rohit’s mother Laxmi (not her real name) attributes her son’s progress to the persistent efforts of the Manav Seva Sangh at Sion, which has been helping autistic children and their parents for the past six years. “We were devastated when we came to know that Rohit is an autistic child. The organisation helped us to come out of the shock and accept our son’s condition,” she says. “They provided Rohit with all the support to help him overcome his shortcomings.” Dr Shivakami Rajamuthiah, a clinical psychologist who has been associated with the Manav Seva Sangh for the past five years, says, “Most parents find it difficult to accept that their child is autistic. They associate autism with mental retardation, which is wrong. Once Rohit’s parents overcame the initial shock and accepted his condition, they were co-operative. Rohit, who spoke only in monosyllables till a year ago, now speaks fluently and attends school like any other child of his age.” At the Sangh, a team of specialists — an occupational therapist, a speech therapist, special educator and an arts and crafts teacher — attended to Rohit, focusing on helping him with his daily activities, including brushing his teeth and combing his hair. Deepali Bhabal, special educator at the Manav Seva Sangh, says, “We create a pre-school set-up for children here. Rohit is a fast learner. However, there are children who may need life-long support.” Bhabal says Rohit’s school also played a significant role in his progress. “The teachers are extremely supportive and give him the required attention. This coupled with our training enabled Rohit to overcome his problems,” says Bhabal. The Manav Seva Sangh has a batch of 20 autistic children and has many more requests lined up.
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