Despite the growing incidence of autism, there is very little awareness on this developmental disability affecting 3-4 children in every 1,000 born in the country today.
Autism is resource-intensive, calling for regular evaluation to track development, but lack of trained manpower is putting services on hold.
For 20 minutes, two-and-a-half-year-old Aniruddha was screaming in pain as his mother, Hemamalini, frantically searched his body for possible ant bites or bruises. She hadn't looked behind his knees, severely burnt by the silencer of a motorcycle. "That was when I realised my son didn't point and tell where he was hurting," she says. "He simply couldn't."
Aniruddha was diagnosed with autism, a developmental disorder that affects the brain in the areas of language and social skills, imagination and activity. People with autism avoid eye contact, have difficulty in expressing needs, will start to speak well and then completely forget language, repeat an activity many times over or, like Aniruddha, have no `joint attention', which means that they cannot point to tell.
Typically, autism appears in the first three years of birth and is difficult to identify. People with autism have no particular `look' or behaviour, making early diagnosis impossible without awareness. In India, there are more people living with autism than, say, Down's Syndrome. More are being born with the disability.
"From one in 10,000 children ten years ago, the prevalence is 3-4 per 1,000 live births now," says Mythili Chari, Founder-Director of the Institute for Remedial Intervention Service (IRIS) and member of the Expert Committee (Mental Retardation) under the Rehabilitation Council of India. "Luckily, autism is increasing," Mythili adds wryly. "Those who dismissed it as a low-incidence disorder are now being forced to sit up and take notice."
According to estimates, over 20 lakh people are living with autism in India. WHO puts the global prevalence at 1 in 500. Boys are four times more likely to have autism than girls. Every year, the National Institute of Mental Health, Secunderabad, registers approximately 100-125 new cases, much higher compared to five years ago, says its Director, L. Govinda Rao.
Yet the disability has hardly received research attention, funding or efforts to create public awareness. The situation is worsened because of the stigma attached. Autism is often mistaken for mental retardation and hyperactivity. Many parents prefer to ignore symptoms than accept that their child needs help. Others make an effort but end up with a wrong diagnosis as doctors put them through the rigmarole of CT scans and MRIs, speech therapists and psychologists.
Some parents simply don't know what to make of their child, termed everything from `troublesome' to `stupid'. Ankit, 10, would hang from the curtains in his living room for hours together, while Sandhya would flap her hands continually and Nirmal would endlessly stack up toy blocks. "It's not that people with autism don't care, they work on different triggers and can be taught to change," says Shyama, a special education teacher working in Rishikesh.
An understanding environment has been shown to produce encouraging results among such children. When 10-year-old Neelkanth joined a centre for autism in Bangalore two years ago, he would run around class for hours, and could not sit to study. Today, he is doing well in Mathematics and Science and has taken a tremendous liking to yoga. He even teaches his mother and sister some asanas.
People with autism can do well in academics and at work that suits their need for routine-based activity but there's almost nothing being done to address this factor, say social and health experts. "Their cognition is deep but they cannot express what they feel," explains Indu Chaswal, a mother of two children with autism, and Education Director of Delhi-based Action for Autism. "Intervention helps bring out their true potential."
After 30 years of study, causes for autism are still being debated. Many experiments have pointed to the genetic link, environmental factors such as toxin levels in the blood, mercury due to vaccines, and pesticides. Health experts say the increasing incidence could be a direct result of greater awareness as well as recognising the condition as a spectrum disorder.
Whatever the causes, autism, the third most common developmental disorder, is also one of the most misunderstood medical illnesses. It was only in the 1960s that the world began to identify symptoms specific to the disability. For decades earlier, autism was mistaken for adult schizophrenia, psychotic behaviour or some form of mental retardation.
In India, a concrete beginning was made in 1991, when Merry Barua formed Action for Autism in Delhi, the first exclusive centre for children with autism. Earlier, the children were put in schools for the mentally retarded though the two disabilities needed different treatments.
The 1990s was a decade of change both in mindsets and policy framework. The Rehabilitation Council of India Act (1992), the Persons With Disability Act (1995) and the National Trust Act for persons with Autism, Cerebral Palsy, MR and Multiple Disabilities (1999) came with a mandate for early intervention programmes, training of schoolteachers and professionals in Rehabilitation and Special Education.
As more people trained to work with autism, more children were identified. Like 11-year-old Deepak, who was sent out of regular school, as none was willing to make the extra effort to teach him though he was a bright child. Today, Deepak is at a craft class at the Saraswathi Kendra Learning Centre for Children, one of India's first schools for children with learning disability, dyslexia, autism and other disabilities, making a flower pattern using colourful sequins. Is he happy here? "Yes," he says cheerfully.
Deepak is among the lucky few. Many others like him get a raw deal due to lack of services and manpower, financial lag, poor empowerment of stakeholders and general apathy. "We are losing out on a large number of children who can be mainstreamed in schools as we are not making a conscious effort to be a little more accommodating," says Jayashree Ramesh, founder of ASHA India Autism Forum in Bangalore.
Training centres focus to make independent those with more severe forms of autism. "A for apple is rote of no use to them. We teach them how to behave in a bank, supermarket, theatre or beach; how to wait at a restaurant, in a queue or at the bus-stop," says Hemamalini. But such centres don't have resources to stretch services. "It's sad to say `No' to parents but taking in more will not help any of them," says Gita Srikanth, who along with Hemamalini runs We CAN, a centre for autism in Chennai.
Services beyond reach
Autism is resource-intensive, calling for regular evaluation to track development, but lack of trained manpower is putting services on hold. There are about 25,000 Special Educators in India today, but in the curriculum used in their training autism was just a cursory mention. B.Ed programmes have no paper on autism. Rehabilitation Council of India's diploma course in autism is offered only in a few cities and Disability Management is not in medical courseware.
Dr Shoba Srinath, Professor of Psychiatry at NIMHANS, with a special interest in autism, says that when for tuberculosis there are two-three medication options, much more needs to be done for autism, which calls for a multi-disciplinary approach. There's so much more to be done." Today, about 200 organisations/schools cater to children with autism in India, most of which are NGOs and parent-run centres. But there are thousands of parents outside its fold, craving to help their child but with services simply beyond their reach.
When they do access, parents shell out anything from Rs 20,000-30,000 a year to train and educate the child exorbitant for the poor. The plight of those in rural India is anybody's guess. Girls there are worse off. Forget education, many are pushed into marriage for fear of losing out on a prospective groom. Timely treatment is only one worry. "The biggest issue is protecting the person with autism and other disabilities when the parents are gone. There are no guidelines now," says Indrani Basu, Founder, Autism Society of West Bengal.
Parents also have to deal with a double-edged emotional sword as they go through anger, sadness, denial and guilt, and have to find the strength to look after their child as well. "They don't suddenly come out of it. When they see other children getting married, or going to school, it hits them that their child can't. That's why more than professional counsellors, other parents can be a great source of comfort for them," says Mythili.
As fears are addressed and policies questioned, there's more aggressive initiatives for change from service organisations, NGOs, parents groups and a fraction of the teacher-community. `It is autism that truly defines their personality', they say, `so it's time we understand'.
There are awareness workshops, seminars and national conferences being organised and more work with schools, Government hospitals and parent-organisations.
More doctors are aware of autism, enabling early referrals, and schools are being urged to be considerate to children with autism. "Awareness is bringing people together," says Poonam Natarajan, Chairperson, National Trust. "A lot of information dissemination is taking place because of it now."
Meanwhile, Aniruddha's life is changing. The 11-year-old can speak single sentences to express what he wants, and is receptive to what others say. He combines signs with language to articulate more complex sentences. Absolutely new situations catch him off guard but he is comfortable to the extent of greeting strangers. He now asks for help when he has a headache or wants a massage. And, he can point and tell.
The way forward...
The Autism Society of India was formed in May last year to mobilise support from the Government, teachers, NGOs, parents and volunteers. The organisation has submitted a draft proposal to the President, seeking rights for children with autism and their family and for safeguarding these rights. The proposal was accepted by the President and is now with the Ministry of Welfare.
The society is currently on a signature campaign to gather support for inclusion of autism in the People With Disability Act, which will enable everything from job reservation to special insurance schemes for them. "Hope by this year it comes through," says Mythili Chari, who's working for the changes.
Chennai, with better awareness on the issue, is now reaching out to rural and semi-urban Tamil Nadu. We CAN, together with Real Image Media Technologies, decided to use star actor-couple Suriya and Jyotika in a one-minute documentary on autism. In February, the film ran in 138 theatres across the State and appeared for two weeks on Vijay TV in March. We CAN received over 120 calls as a result, most of them from smaller towns. Of these, 20 parents attended a one-day awareness workshop in Tamil this month and the word is spreading.
National Trust is currently working on tools to identify autism, to be eventually used by doctors, teachers, health providers, parents and NGOs. "We have worked out indicators and it's being field-tested now. It should be ready by August-September," says Poonam Natarajan, Chairperson, National Trust.
The trust plans to form a team of therapists, psychologists and special educators in child development clinics and is field-testing the idea in four government hospitals. It is also taking on issues of inclusive education, legal guardianship, sensitisation of collectors and its six-month-old residential home concept (there are 76 such homes across India). The trust is working on streamlining availability of the Disability Card as parents are currently forced to identify their child as `mentally retarded' to avail of concessions.
Not to be left behind, the Indian Academy of Paediatrics is getting its act together. Part of its Vision 2007 blueprint is a ready-reckoner on autism. "We have nearly 16,000 members and influence another 16,000 paediatricians and medical practitioners in the country. As a first step, we plan to identity paediatricians who are interested in autism. We also hope to conduct zonal workshops to familiarise them with early identification, rehabilitation and turning them into Master Trainers," says Naveen Thacker, President, Indian Academy of Paediatrics.
Many individuals and organisations are showing through their work that a person with autism will better integrate into society with structured education, perceptive teachers and constant motivation. Merry Barua's son Neeraj, 25, and Indu Chaswal's 16-year-old daughter, Vrinda, are in Action for Autism's work-skills training division, and benefiting from such training. "Now, our children are very independent, and happy. Their vocational skills have improved and they can manage on their own even when we go outstation for workshops. A place with a routine is helping them tremendously. There is dignity in their life now," says Indu.