As the world observes autism awareness day on April 2, there are many couples in small towns and villages across the country who either remain ignorant of the problem their child faces, or are unsure about the future course of therapy or medication needed to help their child face the reality with dignity.

“Ignorance is bliss for parents with autistic kids in villages. Their acceptance and compliance levels are high. As against this, parents in urban centres are more inquisitive and a little rigid when it comes to accept the reality,” says Leena Shrivastav-Pandit, a developmental paediatrician at the child and guidance centre at Bharati hospital here.

Though easy to convince parents from villages that their children are autistic, the biggest challenge lies in helping them with the future course of therapy. “About 50% cases referred to us are from the peripheries and far-flung villages. Though the treatment cost here is minimal, it is practically impossible for them to visit Pune every day,” says Shrivastav-Pandit. Therefore, the child guidance centre at Bharati hospital has started a home programme for parents where occupational therapists and special educators teach parents the daily activities and therapies they should perform to improve their child’s communication and social skills, among other things. “The home programme faces resistance at times when parents question the need for it. They argue that their wards are quiet and do not cause trouble. What they do not understand is that their children are self-occupied and sort of withdrawn from the world. These are typical characteristics of autistic kids that need to be addressed with constant counseling,” says Shrivastav-Pandit.

Education for autistic children in villages is another area of concern because they cannot be a part of regular schools unless efforts are made to assimilate them in the mainstream education set-up.

Some 200 kms away from Pune in Chandanapuri village of Sangamner taluka, Shubhangi Sule, a graduate mother of a 10-year-old mild autistic girl, Gargi, tried something unique. “My daughter was diagnosed at the age of 2 and a half years, mainly because my husband is a doctor. But I had to take her all the way to Nashik, which is about 70 kms away, for therapy. This because my child failed a number of times in the nursery class of the local school. I decided to open a school for such children. I could convince parents of 11 autistic children. But we hit the road block because no special educator was willing to come all the way to Sangamner to teach. So the idea fizzled out. Now my daughter is 10 years old and I have got her admitted to a special school in Pune.” Gargi knows a bit of cooking and her mother hopes she can be trained in basic culinary skills to help her sustain in future.

Jalinder Wackchore, a farmer at Girgaon village in Akole taluka of Ahmednagar district, has tried all means to provide education to his 11-year-old son Om, but in vain. “Nobody in our village knows a thing about Autism. We cannot go to Pune often because we cannot afford it. The government can do us a favour by appointing at least one special educator in every village.”

The Sarva Shiksha Abhiyaan (SSA), a flagship programme of the Central government, aims to address the dilemma of such parents with its focus on inclusive education. The SSA ensures that every child with special needs, irrespective of the kind, category and degree of disability, is provided meaningful and quality education. Hence, SSA has adopted a zero rejection policy. This means that no child having special needs should be deprived of the right to education and taught in an environment, which is best, suited to his/her learning needs.

Asenior officer associated with the SSA in Maharashtra said, “Our biggest success so far has been that we were able to reach the needy children in about 66,000 schools across the state. We have 2,527 special educators who go to these schools, mostly located in remote areas, identify children with special needs and counsel the local teachers on how to help them academically and socially. So far, we have identified 3,419 autistic children.”

When it comes to assessing the success of the SSA in reaching out to autistic children, it is important to know that lack of sufficient human resource has been the biggest barrier and not lack of funds, said the official. “We are training as many teachers as we can through a multi-category training programme. In general, teachers need to have a flexible approach when it comes to dealing with children with special needs.”

• No big smiles or other warm, joyful expressions by 6 months of age
• No back and forth sharing of sounds, smiles or other facial expressions by nine months or thereafter
• No babbling by 12 months
• No back and forth gestures such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful phrases (without imitating or repeating) by 24 months
• Any loss of speech or babbling or social skills at any age