On World Autism Awareness Week parents speak about the struggles and joys of raising children with autism
Shaurya Bhaskar was a young boy diagnosed on the autism spectrum at two and a half. One day, as he sat fidgeting on the swing in the park, a woman walked by his mother Abirami Duraiswamy and asked her, “Avan loose-aa?” Society’s regressive classification of Shaurya has lasted his 10 years. “Despite his academic competence, I approached 30 different schools before one finally gave Shaurya admission. No one was willing to try accommodating him even if I promised to help him in class myself,” says Abirami. Most parents of autistic children have these tales of rejection. And the struggle begins right at birth.
Preetha’s son Ravi spent his first two years with paediatricians being treated for kidney problems, but Preetha knew something wasn’t right with him otherwise as well. However, it was long before he was diagnosed autistic.
“I lost the period of early intervention because no paediatrician noticed the signs. Parents will never take their newborn to a psychologist or a psychiatrist for testing. Since autism can be picked up as early as six months, gynaecologists and paediatricians - professionals involved in the child’s initial years - must be trained to do so,” says Preetha. Finding the right diagnosis for his son was Karan Ram’s first nightmare. “There were times when I’d spend 20 hours a day on Google researching my son’s symptoms even when my paediatrician said he was fine.”
Like Karan, most parents of autistic children tend to become unofficial psychologists, therapists and special educators in the process of understanding their children. Harsha Shah, mother to 20-year-old Neel says two decades ago, Coimbatore barely had the resources or awareness to manage her autistic son. She hence procured tools and books from the US and taught herself to cope. Across parents, there’s a resounding sense of being alone in the fight against autism. Says Abirami, “I read Catherine Maurice’s book Let Me Hear Your Voice and I decided that I am going to pull Shaurya out of his autism myself. But within eight months I had seeped into deep depression.”
The absence of a support system is the biggest lacuna believes Bernard Thomas, father to two autistic children. He speaks of support groups abroad such as respite systems (teams of professionals who handle children completely) and parent groups where parents meet and take turns to look after all their children for a few hours while other parents relax.
The need for co-ordination
“In India however, there was a time when I slept two hours and travelled 85 km each day taking my children to the speech therapist, occupational therapist, physiotherapist, and special educator, all in different parts of the city,” says Bernard’s wife Jean. The lack of interconnection between services leaves the parent to judge the effectiveness and necessity of each therapy. “At the end of the day, I knew that I had to find the right people to help my child, I had to do all the follow up and I had to measure his progress. Even when society says a child with autism cannot achieve, I had to believe he could,” says Renuka, mother to an eight-year-old autistic son.
For Jean, the need to become self-sufficient for her children, lead her to learn Applied Behavior Analysis (ABA), an approach which few Indians are certified in, and train her daughter herself. She believes that India also faces the challenge of poor research and few therapists qualified in the latest methods. “Sometimes, all you need is the right method to teach your child a skill. It shouldn’t take more than a few months to toilet train your child, but it took my daughter eight years because I didn’t have the right tools.” For some parents the self-dependence can lead to extreme stress and frustration observes Bernard. “Parents tend to either go into denial or take their anger out on their child and hence, abuse is often common in these families,” he says.
For all its challenges, having an autistic child has given them a radically new perspective on the world say parents. “The focus isn’t on picking engineering or medicine for my son’s future. It’s about ensuring he has basic living skills so that he isn’t a burden on anyone after my time,” says Sriram Narayan. And it’s in these small daily achievements that immense pleasure lies. “I may have worked with Neel for weeks on end with no results but the day we breakthrough and he smiles, it’s like God smiling at me,” says Harsha. Adds Bernard, “We’ve grown closer as a family and learnt to find value in more than the material, and in the non-typical. That’s the essence of this life.”
Some names have been changed to protect privacy on request.