Fighting The Good Fight Against Autism & Lack of Awareness
By: WE Staff | Friday, 6 October 2023
Saranya Rengaraj, Founder-Director of Third Eye, a centre for autistic children is on a quest to empower and broaden the horizons of children with autism through scientific and evidence-based treatment and approach to integrate these people into mainstream society. This is her story!
Autism is today the world’s third most common developmental disability. Reports suggest that nearly 18 million people in India have some form of autism. It affects nearly 1-1.5 per cent of children between the ages of 2 and 9.
The challenge is aggravated by a lack of awareness and acceptance. Saranya Rengaraj, a certified psychologist identified these challenges early on in her career. While working with Sharanalyam orphanage, she found out that several women and children living there were being unfairly branded ‘mentally ill’, while they were people with autism.
This lack of awareness propelled her to establish the Third Eye Centre, which trains children with autism and other developmental disabilities from ages two to 18 years.
The Women Entrepreneur team spoke to Saranya about her experience of establishing the Third Eye Foundation and working towards improving the lives of thousands of children. She narrates several anecdotes and takes us through the impact created by the Third Eye Foundation’s work so far.
What led you to establish the Third Eye Foundation? What was your initial vision for the venture?
I launched Third Eye in 2013 with the vision of training children aged two to 18 years with autism and other developmental disabilities. The centre provides individualized service to each client and family. All our treatments and programmes are based on the unique needs of each child. The organization’s vision is to empower and broaden the horizons of children with autism through scientific and evidence-based treatment and approach to integrate these people into mainstream society. Our curriculum focuses on all areas of development—teaching and increasing adaptive skills; and reducing problematic behaviours. We employ a collaborative approach that focuses on incorporating treatment in all aspects of a child’s life with active caregiver and family participation.
With your background in psychology and multiple certifications, you have dedicated yourself to autism awareness and intervention. How did your education and training empower you to lead Third Eye?
My qualifications and experience have helped me understand the core problems of autism and treat the actual problems, rather than just giving some solutions for the moment. At Third Eye, we also provide a lot of training to parents to make sure that kids are trained not only at the centre but also at their homes so that they can be easily integrated into society.
I go according to objective needs and our programmes are completely data-driven, where we can see the duration a child is taking to learn each skill, what is happening when the child takes a break and what kind of problems we face once they come back by recording all the data. Once a kid joins and even after two years, the data we record will demonstrate what we have done at the centre, and the ability of the child to cope with each task or skill. That’s how my experience and my professional experience help. Till date, we’ve trained more than 400 children in the third eye.
I feel that, since I am equipped with more knowledge about autism, I can create a lot of awareness about the disability, talk about it, break the social stigma and tell parents that, if you take certain steps, you can see the actual results rather than just giving a subjective or an emotional speech, saying, “Oh yeah, this child is so sad, we should help him/her.” That’s not how we deal with autistic individuals here. My education and experience help in breaking the social stigma and providing the right support at the right time. We also make sure all our programmes are evidence-based. It’s completely based on research and we also conduct a lot of applied behaviour analysis programmes.
You have trained more than 400 children since 2013 and integrated many of them into mainstream schools. How do you measure the impact and effectiveness of your programmes and the services at Third Eye?
We rely on multi-sensory experiences through pets, gardening, art, library, music and dance, computers, physical education, technology-integrated approach to education, logical reasoning games and yoga curriculums. All these activities help us measure the effectiveness of our programmes and services as we can observe more closely the drastic and productive changes among the children.
The first step is to make an assessment and see what skills a child lacks, especially communication and social skills, and what problematic or challenging behaviours we see. Based on that, we develop an individualized education and behaviour programme and work on the child. We also measure the child’s progress through data collection. Whatever skills we try to improve or whatever behaviours we try to correct—we do a lot of data collection and record everything. So, even after five years—from the time a child joins the centre—you can come and just ask us, “Where’s the data of this child? Show us what you’ve been doing for the past five years and what do you understand from that?”
And the other thing is that we integrate these children. The integration usually happens for the early intervention kids and mainly for kids who come to us at age one-one and a half years, or two-two and a half years. We try to incorporate as much as we can and try to help a child learn communication skills, social skills, or whatever is required to get a kid integrated into a mainstream school.
These can be simple tasks like standing in line; just sitting in the classroom for a few minutes without disturbing others; being able to ask what he/she wants, understanding what a teacher says and acting accordingly; or sitting in a circle and having food. We develop these skills when we’re sure that the child is ready to be integrated. We talk to the parents and provide them with a lot of counselling.
We also ask the parents to come for reviews once every three months for the first year to see how their child is learning. We also keep a watch to see if any problem behaviours are coming back, or if the child is getting more stressed in school. After one or two years, if there isn’t a big problem and the child is learning all right, we gradually reduce the parent visits to once in six months or once a year.
You emphasize the importance of functional skills. Can you give us an example of a particularly impactful skill that a child has developed through your programmes?
Functional skills are skills that we teach a child and the skills that a child develops and can be used in his/her daily life. They will be simple and useful life-skill training skills, like brushing one’s teeth, dressing up and eating properly. A lot of times, we come up with eating programmes to teach the kids how to chew, how to swallow and how to sit in a circle and eat. All these are functional skills. Even eye contact and name-calling responses are functional skills that we try to teach the kids.
Many a time, we see that these kids lack imitation skills. Imitation skills mean just waiting, observing others redoing what others are doing and being able to imitate them. And then, slowly, we also teach them communication and social skills that will be functional so that they can be integrated into society.
We are not even talking about school—just integrating them into society—because, a lot of times, parents have difficulty in taking these kids to shopping malls or restaurants or play areas because the child doesn’t know how to behave there and is unable to follow instructions. So, more stress is laid on teaching skills that can help the child communicate with society and get integrated.
One instance was this child from the US—of course, with all the support in the world, the child was going to various support programmes throughout the day—who had a personal therapist at home every day. But the mother was still not very happy about the improvement the seven-eight-year-old kid was showing. She didn’t know how to eat or how to use the restroom. She didn’t have communication skills. But, just three months after coming to Third Eye, she learned to eat whatever food they gave her. In the US, they gave her only pasta because that was only what she could eat. But here, she could eat any meal. She also started speaking and the parents were so happy after six months of therapy that they took her back to the US where they continued with the therapy there.
As a Board-Certified Assistant Behaviour Analyst and a Certified Autism Specialist with vast experience in training children with developmental disabilities, can you tell us about a breakthrough moment or approach that you believe has had a profound impact on the children you’ve worked with?
I have a lot of experience in autism and many certifications. I have also handled many kids with autism. But still, whenever a child walks through the door, I become very nervous because I know we’re going to learn something new from the child. Because autism is a wide spectrum, no two children are the same. So, I know that every walk-in is going to be an entirely new experience for us.
I also become extremely happy and delighted when a child learns a new skill. For instance, a child may not have sitting tolerance, eye contact and no name-calling response. They don’t have communication skills and throw a lot of tantrums. Moreover, many kids may have problem behaviours, such as walking on their toes, or even hitting their trainers. But then, most kids end up being so good after a few months of training that they will be able to sit in one place or go out with their parents.
Many parents come back, saying, “Oh my God! I’m finally able to take my child out for a walk or to a shopping mall where I don’t have to be nervous and in tears when my child displays problem behaviour.”
So, we see parents coming to us and saying, “We’re so happy my child can speak… my child is calling me ‘Amma’! (mother). I’m so grateful, I’ve been waiting for this moment for so long!” We’ve seen parents who travel from abroad to get therapy and support from Third Eye. They say, “Even after so many years of therapy abroad, we haven’t seen the kind of improvement that we’re seeing here in Third Eye.” So, they happily go back to their country after developing a few skills.
Every year, we integrate a minimum of 15 kids into mainstream schools. When we see photos of these kids in school uniforms which their parents share, we feel so proud! Whatever efforts we have put in, all the rollercoaster rides we went through, besides handling the parents and their emotions, feel so much worth it when we see these photos. It’s really all worth it!
Your journey from founding Third Eye to receiving numerous awards and accolades is truly inspiring. What were some of the most significant challenges you faced along the way and how did you overcome them?
Initially, when I started Third Eye and, after studying so much and receiving so many certifications, I confidently came back to Coimbatore. I started my centre in Pollachi, a small town near Coimbatore. I reached out to everybody asking if they had a child with autism and if would they please come and take support from us. But the biggest problem was that not many knew what autism was. They didn’t understand it and always termed it “a mentally ill condition” in those days. This was 10-12 years ago. I had to create a lot of awareness about what autism was and then ask the parents to bring their children to the centre. And, even when they did come, the parents were always in denial. My problem was to counsel the parents, convince them, make sure they understood and then enrol their child at the centre. We made sure we provided improvements and it went on after that.
But, initially, the main challenge was just convincing the parents and making them understand that their child lacked certain skills and could be autistic. We told them they should give their child in for therapy at Third Eye so that they could see better results. That was the most difficult part! We realized that, despite us having a really good centre, we had to be the best at our work. The most important thing for us about 10-12 years ago was to create a lot of awareness. We still do a lot of awareness programmes, but, now, we see a lot of changes. Nowadays, a lot of people know what autism is. After we started our awareness programmes, many hospitals started doing the same. Initially, the hospitals, themselves, had been unaware of autism or didn’t consider this condition seriously. We’re extremely happy about our work.
Your seminars and events have reached schools, malls and public spaces. Can you share a memorable moment from one of these events that made you realize the impact of your awareness efforts?
Yes, we’ve done a lot of autism awareness programmes, even in public places. I’ve given many interviews on social media so that parents can be aware of all the symptoms of autism. I’ve conducted programmes at many schools and colleges. But then, we still see some parents in denial. Recently, there was a parent who was in total denial that their child had autism. The kid was diagnosed as autistic at age two. But, till three and a half years, the parents didn’t give any therapy to the child because they were in denial.
Now, after seeing my interview and our autism awareness programmes, they realized that the child needed immediate support and brought the child to Third Eye. The parents said they were grateful to us because we were doing so many events constantly and were talking about autism. These parents had no other choice, but to say, “Yes, we accept it and want to provide the right help to the child.” We’re extremely happy when parents understand our awareness events and give their children the right support at the right time.
Looking ahead, what are your aspirations and plans for Third Eye? How do you envision its role in shaping the lives of children with autism and developmental disabilities in the years to come?
We want to expand Third Eye to as many branches as possible using our techniques and strategies to change and shape the lives of autistic children. We want to reach out to as many families as possible by developing these branches. We are also planning to come up with vocational skill programmes so that we can eventually set up a kind of business for them. It can even be a supermarket or a restaurant. That is a long-term plan. But, for now, we are planning to branch out to as many cities as possible in the country and abroad so that we can help as many kids as possible.