Initiative

'We CAN' Fight Autism

Two women with a common interest - autism - make the story of We CAN. What took off during open meets for parents of autistic children in Chennai has evolved as a training and resource centre for autism, reports K Deepalakshmi

Autism is a neurological disorder affecting little children that is often noticed only when they are around two years or older. Autistic children have difficulties in verbal and non-verbal communication, social interactions and imagination. It is diagnosed by the presence and absence of certain behaviours. An autistic kid prefers to be alone, does not know how to express himself— both verbally or through gestures, has difficulty in mingling even with own parents.

A WHO survey states that the incidence of autism is one in 500. It is four times more likely to occur in boys than in girls. The plight of these children is sad, their future gloomy which leaves the parents of these children distraught and helpless.

We Challenge Autism Now ('We CAN'), a non-profitable organisation run by two women, Hemamalini Jairam and Gita Srikanth — the Directors, with a group of parents, individuals and enthusiasts is a ray of hope for these special children and their parents. Located in the calm surroundings of Neelankarai, off East Coast Road, Chennai, 'We CAN' is probably the only resource centre exclusively for autism in Chennai. "'We CAN' is a trust and resource centre for helping autistic children, educating the parents and caregivers and creating public awareness about autism," explains Jairam, who herself has an autistic son.

"'We CAN' is a trust and resource centre for helping autistic children, educating and creating public awareness about autism" - Hemamalini Jairam Director WE Can

"These modules are free from jargon and written in colloquial Tamil for better understanding" - Gita Srikanth Director WE Can

Seeds of Growth

Formed in 2001, 'We CAN' was started as an one-stop place to know about autism, for parents and public who were unclear about the disorder. While trying to find out more about autism, Jairam came across 'Vidya Sagar', a Chennai-based voluntary organisation serving people with cerebral palsy and other neurological disabilities. "Vidya Sagar allowed us to use their lawns to conduct a monthly meeting of parents of autistic children," she recalls. It was during these meetings she got to know Gita Srikanth.

Srikanth approached the meet to learn more about autism, when her friend's daughter was diagnosed with the disorder. Both of them, with a group of parents and individuals started 'We CAN' in 2001 in a house in Kalakshetra Colony with 12 autistic boys. The house owner gave the house rent-free in support of the cause.

Their first hurdle was to find trained caretakers and teachers. "We are still facing that problem. It's hard to find people," Srikanth admits. They found trainers from 'Vidya Sagar', which conducts training courses for trainers. 'We CAN' initially had five trainers and some volunteers to help them.

'We CAN' now runs in a bigger rent-free house in Neelankarai since September 2007 as a training centre for children and a resource centre for parents and the public. 'We CAN' trains these children to help themselves, conducts workshops for the parents and awareness programmes for the public— in short, works for the betterment of children with autism.

Training in Basics

'We CAN' runs a day learning centre for children. The children are taught communicative and social skills. Autistic children have difficulty in initiating and sustaining relationships among their peers. These children are taught everything from the basics through a one-on-one teaching methodology. "For some older children, say 10 or 12 years old, who were not given early intervention, we have to train them from scratch, such as how to eat, how to use the bathroom etc," Jairam explains.

"Some kids come here with specific problems like difficulty in communication. We do troubleshooting in these cases," says Srikanth, adding, "They are trained with specific modules in a part time course." A part time course is a remedial programme, conducted twice a week, for those who don't attend the day care centre. 'We CAN' currently has 12 children enrolled in its full time programme, and five in the part time remedial programme. There are ten caretakers cum trainers to take care of them.

Training these kids is not an easy task. Since they lack the capacity to communicate, they have to be given special care. Hence every child is individually taken care of by dedicated trainers. A kid is enrolled in the learning centre only when a dedicated trainer is appointed for him or her. They are trained by Applied Behaviour Analysis (ABA) and Verbal Behaviour Analysis (VBA), the popular teaching methods followed for training special children. The training mainly concentrates on making the child more expressive using methods like sign language, and other cognitive and social skills using positive reinforcement.

The children are also trained in self help skills, pragmatic skills, play skills, arts and crafts, yoga, music, occupational therapy and so on. "If necessary we refer them to doctors and specialists," adds Srikanth.

Inclusion of these children in society is the priority of 'We CAN'. Society tends to isolate them. "Though these kids look no different they behave differently," as Srikanth points out. The children are groomed by 'We CAN' to become a part of society.

Detecting Autism

Though there has been a gradual increase in awareness on autism, it is still less even in metros. Autism is often mistaken for other mental disorders like schizophrenia, dyslexia or even mental retardation. There is no medical test to diagnose the condition. "When my son didn't talk even after two years, the paediatrician initially advised me to enroll him in a play school," laments Jairam. Beena Prithiveeraj, mother of 12-year-old Ahed recalls, "When my son was around three-year old, he could sing and repeat some words, but he never talked. He preferred to be alone." She consulted several doctors to diagnose autism. Ahed is now a student of 'We CAN' and his mother has observed noticeable changes in his behaviour these days. She is also a volunteer in 'We CAN'. What is the ideal age to detect autism? "The earlier the better," she says and suggests, "If your child avoids eye contact, doesn't respond to your call or if you find anything amiss, it's better to seek help." Another difficulty in diagnosing autism is that the diagnosis methods are developed in the West and most of them are irrelevant to Indian children. "One of the questions is 'does your kid have difficulty in using a knife and fork?' which is something not widely used even by adults here," Srikanth complains. A diagnosis test custom made for Indian children is required.

Parental Care

Parents have an important role to play in the bringing up of any children, but more so in such special cases. Rightly therefore, 'We CAN' helps the parents too. "There is a general tendency of coyness among the parents. They don't want the world to know that their child is autistic," Jairam observes. They are given informal counselling here and are made to interact with other parents. This gives them a morale boost. 'We CAN' conducts workshops every month for the parents, to create awareness on autism and bringing up their kids. The topics are split into three modules: ‘What Is Autism’, ‘Autism and Communication’, and ‘Autism and Challenging Behaviour’.

"These modules are free from jargon and written in colloquial Tamil for better understanding," Srikanth explains. "They are delivered in the form of skits and interactive sessions," she adds. "The parents lose their shame and stigma after seeing more people like them," Jairam feels, on the success of these workshops.

Changing Perceptions

Public perception of autistic children is wary, based on ignorance about autism, myth and misconception, and a lack of awareness. In order to bring the children into regular society, 'We CAN' took the first step to create awareness in January, last year. In association with Real Image Technologies, they produced a one-minute film on autism, directed by ace cinematographer PC Sreeram and featuring Tamil actors Suriya and Jyotika. The film was aired in all cinema halls across Tamil Nadu, reached all sections of society and had an overwhelming response.

Training the Trainers

'We CAN' has a team of ten well-trained trainers to take care of the children. "Certain institutes like Action for Autism (AFA), Delhi and Vidya Sagar, Chennai and V Excel, Chennai conduct certificate courses for trainers and parents," Jairam reveals. The trainers and caretakers were educated from these institutes. They are given continuous training from 'We CAN' to update their knowledge with the latest techniques. 'We CAN' organises internal training to teach the nuances of training for special children. Smita Awasthi, a BCBA (Board Certified Behaviour Analyst), comes to Chennai from Dubai once a year, to impart training to the trainers.

"It is hard to find trained people," Srikanth confides, adding, "There are people who are doing it as service and a career option and the increase in supply is gradual."

The Funding

'We CAN' primarily runs on donations from philanthropists. The donations are exempted from income tax. They charge Rs 2,000 per month for children enrolled in day learning centre and Rs 150 per hour for remedial programmes. "The amount we collect does not even meet ten percent of our expenditure. But this amount helps us pay our trainers," says Jairam. However, even this fee is waived for those who cannot afford it. Some volunteers extend their services free to 'We CAN'.

The Road Ahead

In future, 'We CAN' plans to train children for inclusion in schools, teach them handwork and vocational training. However, they feel the pressing need is to create awareness among the public. There is a tendency in the society to be judgmental towards autistic people. Jairam appeals, "Disability is another culture. Respect them and let them live with dignity and acceptance." Srikanth concurs, "People should realise and change their perception of these children."

An open mind and a helping hand is all that 'We CAN' needs and aims to bring out from the society to challenge autism.

We CAN No 5, Blue Beach Road, Neelankarai, Chennai 600 041 Phone: 044-6546 1010 wecantrust@rediffmail.com
www.wecanindia.org

k.deepalakshmi@expressindia.com