“The next time we talk to parents who are raising children with autism, let us be more kind in our use of words, and remember to encourage, motivate and validate their efforts,” says Sulekha AK, mother of 17-year-old Ruywada.
“If a child has a problem, let us accept that and stop keeping it a secret from others. Instead of worrying about how they will live after us, let us teach them to be capable of handling themselves,” says Sabitha, mother of five-year-old Neeharika.
“She is autistic and talks, many people are unable to believe [that]. This shows an inclusive ambience can make a difference in our children,” says Rajeev Kamath, father of 33-year-old Pratibha Kamath, a sitar player.
Coming from different walks of life, these parents of children on the autism spectrum spoke about the journey with their child in short videos uploaded by The Center for Autism and other Disabilities Rehabilitation Research and Education (CADRRE), Thiruvananthapuram, to mark Autism Awareness Month in April.
Embrace acceptance
Candid and pragmatic, the 29 uploaded videos touch upon different aspects of bringing up an autistic child. They are aimed at supporting parents with special children and raising awareness. “Every year we observe Autism Awareness Day on April 2. From April 2 to 30, there is an activity or session to create awareness about autism,” says G Vijayaraghavan, honorary director of CADRRE.
Sulekha AK with her daughter Ruwaydaha, a student of CADRRE in Thiruvananthapuram
For 2021, Radhika SB, executive, communications at CADRRE, suggested short videos of parents talking about bringing up a child on the autism spectrum — the challenges, parenting hacks, training, societal acceptance, schooling, and so on.
“I was never sure how a parent of an autistic child would react to questions about their child. It is a sensitive subject. That is why I thought it would be best to have the parents themselves talking about what they expect from society, peers, family and friends,” says Radhika.
Lekshmi Nair, principal adviser, CADRRE, points out that some parents do find it difficult to accept their child is autistic, initially. And so the first step is acceptance; the next step is to find out how best you can help your child. So, staff members of CADRRE choose parents who were willing to share their experience with viewers.“I have learnt that there is more acceptance when parents of a special child themselves talk about how they help their child. For instance, my daughters are hearing-challenged, and parents listen to me when I talk about opening up opportunities for these children,” explains Vijayaraghavan.
Dr Gayathri S with her son Harinandan Satish
So Lekshmi and Malini G Unnithan, centre coordinator at CADRRE, chose parents with children in different age groups and with various levels of abilities. “Some are parents of students at CADRRE, some have children who are role models for others on the spectrum, while some have gone on to become guiding lights by forming organisations, Facebook pages and support networks,” says Malini.
The parents speak about different aspects of looking after a special child, their aspirations and concerns. “They speak about family, siblings, extended families, peer groups, medical interventions, employment opportunities, rights of the child, his/her space… unknowingly covering several issues that families face when taking care of an autistic child,” says Lekshmi.
Empathy, not sympathy
The highlight of every video is the parents’ candour. One of them, Reena Babu, recalls feeling heartbroken when her daughter was diagnosed with autism at the age of two. She touches on the financial, emotional and social toll it takes to bring up a special child, and how she decided to see every step as an adventure and refused to be overwhelmed by it.
In the case of Hari Gopal NS, a resident of Thiruvananthapuram, he recalls the difficulties he and his wife faced when taking their son Srihari to public places and gatherings. “Extremely sensitive to certain sounds, he gets easily irritated by some noises. He would start making noises to drown out that sound. We had to make our relatives and friends understand things from Srihari’s perspective,” he says.
Hari hopes the videos will help viewers better understand the world of children with autism, adding that the inspirational videos give hope to parents. “Parents talk about children who are holding jobs, pursuing the arts and earning an income. A lot of patience is needed when taking care of a child with autism, and we want empathy — not sympathy — from society at large,” he says.
Rajeev Kamath with his daughter Pratibha Kamath
Rajeev shares with viewers how peer acceptance helped his non-verbal daughter Prathibha turn into a chatterbox. “Each autistic child is unique. Their challenges and abilities are different. There can’t be one formula for every child,” he says.
The lockdown has been a period of great challenges for caregivers of young children on the autism spectrum, as many of them take time to get used to new routines. “Earlier, trainers used to teach our children. Now, since it is all online, trainers include parents in the therapy sessions and we have to teach the child. We are coping well now,” Hari adds.
Ruywada, meanwhile, began a Facebook page, Thumbi by Ruwi, during the lockdown to promote her handmade products such as fridge magnets, bangle holders, key-holders and so on.
As the parents assert in the videos, society has to become inclusive to accept and embrace people on the autism spectrum to help them blossom and live their life to the full.
