Attempting to break down the puzzle of autism, we talk to Merry Barua, Founder and Director of Action For Autism, a national charitable organisation that pioneered the autism movement in South Asia.
By Malini Gopalakrishnan
It was in the early 1940s that autism was picked up by researchers as a unique set of neurological conditions affecting the development of the brain. The word ‘autism’ is derived from the Greek word ‘autos’, meaning ‘self’. At the time that it was first used, Dr Leo Kanner from John Hopkins University used it to describe socially-withdrawn behaviour in children. Over the years, our understanding of the subject has changed and, maybe, has evolved.
Autism is a difficult condition to diagnose and is, therefore, widely misunderstood. Merry Barua, who has been a pioneer in the field of autism awareness helps us understand the subtleties of the disorder and illustrates the way forward. Merry shares her own experience as the founder of Action for Autism and as a parent to an autistic child.
Here are the excerpts:
Q: Autism has long been misunderstood, not only in India but the world over. Can you help us understand what constitutes this neurological condition and how it affects a child’s development?
Merry Barua: One of the main reasons why autism is so widely misunderstood is that it is an invisible condition and not very easy to understand. When you talk about someone who has a physical disability, for example, hearing disability or blindness, you can perceive that disability. It is a very visible issue and a direct one too. With autism, it is not so. Autistic people can hear, often speak, and appear to understand. They look ‘normal’, and yet they have challenges. Since the challenges are in the realm of social understanding, it is even more complex. Even now, well-meaning and reasonably experienced professionals don’t really understand autism.
People sometimes see the fits of anger, the ‘unruly behaviour’ and call it ‘difficult’. But, what is the reason behind such behaviour? It is the frustration of not being able to understand or perceive subtleties in communication. It is the unpredictability of the social world. The world around is confusing to the person with autism.
Q: Autism is often misdiagnosed and even ignored. So, what are the early signs of autism?
Merry Barua: There are telling signs that parents can look for.
Q: On a day-to-day basis, what are the various challenges faced by autistic children?
Merry Barua: The main challenges are:
Q: Inclusivity in education is greatly talked about, but do you think enough is being done to help these little ones with special needs?
Merry Barua: Inclusive education would be the best thing to happen. But honestly, it is still aspirational. Inclusivity is best when a child is happy in the learning environment and learns in the environment. In reality, our educational system is not ready. People often feel that if the kids are in a regular school around regular kids that would automatically teach them social skills. Children with autism are put into an environment and are expected to behave normal. It is not enough to teach them the skills; the environment around them also needs to be adjusted to accommodate their needs. That is never done.
The crucial thing about inclusion for autistic individuals is the use of structures and visuals. Also, there has to be a huge attitudinal change and unless that happens, inclusivity will remain a distant possibility.
Q: What about home-based therapy for sensory issues?
Merry Barua: Sensory issue is not the central issue. We at Action for Autism are big propagators of home-based therapies. The reason being, there aren’t enough trained professionals for the present population of kids with autism. That is why we keep encouraging parents to start understanding autism, to understand their child, and to take charge. This way, they are not dependent on someone else. There are so many ‘therapies’ of little value that parents need to be empowered and trained to pick the right one for their child. If a child is attending a school for four hours and parents know what to do the rest of the time when they are at home, the prognosis is much better.
Q: As a parent who has the experience of raising a child with autism, what was your biggest challenge and how did you overcome it?
Merry Barua: My son is going to be 36 this year, but when he was a child, there was absolutely no awareness about autism. There were no support systems, no Internet, and no books to guide me. It was very difficult. That was one of the reasons I started Action for Autism. People did not understand autism. Those days, everywhere we went, I noticed that there was an initial resistance from everyone around to our son’s condition. But, people eventually changed. So, here’s what I learnt that I tell people all the time. If you accept and are comfortable with your child’s condition, society around you will also learn to accept your child. This is my advice to all the parents out there too – accept your child the way he is. When I started working on Action for Autism, my vision was to change the scenario for autism, create awareness, and change policies, so that people with autism and their families have better lives. Compared to the time we started this, a lot has changed today - there are tons of special needs schools, there is inclusion happening, there are so many empowered parents around. But, of course, none of this is enough. There is more work to do.
“Think of it: a disability is usually defined in terms of what is missing… But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique,” says Paul Collins, American writer and parent of an autistic child. Let us also learn to perceive autism the way Paul Collins does – an over-expression of the unique traits of the human species!
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