Merry Barua: The Visionary Who Shaped the Narrative on Autism in India

Last Updated on February 27, 2024 by Partha Protim Choudhury

Autism Spectrum Disorder (ASD) or autism is a developmental condition, which can impact the neurological development of a child. As a result, the child may experience trouble in communication and interactive abilities.

According to the World Health Organization, nearly 1 in 100 children has autism. A 2019 research paper suggests that to understand the prevalence in India better, we need more high-quality population-based epidemiological studies on ASD.

Merry Barua is an activist and trainer and the head of the National Centre for Autism, which is largely known as Action for Autism. It is an organization that stands at the forefront of creating awareness and fostering understanding about autism. It has spearheaded the establishment of the Centre for Autism, a distinctive school in India designed to cater specifically to the unique needs of autistic children. Her work in the field led the government to include autism in the Rights of Persons with Disabilities Act. Merry Barua’s visionary leadership continues to transform the landscape of autism support, leaving an indelible mark on countless lives.

How has the landscape of autism awareness and acceptance in India evolved since you began your journey, and what challenges remain?

Merry Barua: There have been significant changes in the way things were earlier, and that would be in the sense that there is much greater awareness of the existence of autism because when we had started, it was not known to exist. And if at all, even professionals used to think that this is something that only happens in Western countries. This is not something that happens in India. So, I would say that is one very big shift. The acknowledgement that autistic people exist as much in India as they do anywhere else in the world, is a very big change.

The other things that have happened is that there is the possibility of diagnosis that has gone up. It is not as much as it should be, but it definitely is happening much more now. Of course, it is more in urban areas and larger towns. In smaller towns, it doesn’t really happen as much. The awareness is still not as much there for diagnosis in the sense that people do not recognize that somebody may be autistic even if they’re seeing them, which is why the diagnosis is not happening.

Some of the major changes that have happened are policy-related. As a result of the Right to Education Act, for which which the disability community fought to have disabled people included among the marginalised groups, which happened in 2012 eventually, government schools have to admit autistic students. Even private schools have to admit students with autism. There is a quota for that. It’s a different matter that it does not happen as schools do not want to invest in understanding how to support autistic or other disabled populations, but the law is there. Hopefully, that will bring about change. It is bringing about change because there are schools that have a more inclusive mindset that are really making an effort and they can lead the way for others. So that’s been the other change.

But I would say the biggest change that has happened is for a long time, autistic people were only understood from the perspective of non-autistic people or neurotypical people. The understanding was driven by the understanding of those who don’t have autism. So obviously we saw them from a very deficit-oriented perspective that they can’t do this and they can’t do that because we were not really understanding their experiences.

Now, because of an increase in the number of autistic people who are speaking for themselves, as has happened with the blind community, the deaf community or the wheel-chair using community, they are speaking for themselves. It changes perceptions. And that is beginning to happen with the autistic community in India. They are beginning to speak for themselves.

I know that as an organization, we started with a perspective that we have to be non-judgmental of autistic people. And others were different. That was our driving principle. But despite that, we didn’t really understand their experiences.  For instance, the general perception is that “Oh, they do not understand how other people’s minds work.” But they do understand how the minds of other autistic people work and they do not understand how the minds of neurotypical people work exactly the same way as neurotypical people understand how other neurotypical minds work, but they do not understand autistic minds. As an organization, we are still working on it. We are not there. But many organizations, at least a few organizations, I won’t say many, are trying to take on a more neurodiversity-affirming perspective in supporting autistic people. So I would say these are some of the biggest changes.

One other thing is that earlier there were autistic people in the workforce who were kind of coping and managing and trying to cover their challenges. This is because if the challenges got known, people were not particularly kind to somebody different but who were coping. But now there are people who are very obviously autistic and are getting employment because some companies are beginning to open up to having autistic people on their team.

I think the neurodiversity-affirming perspective is one of the biggest changes that has happened. It still has to spread. It’s like a seed right now. It has to move to spreading a lot more.

What does India lack as a support ecosystem for parents of an autistic child?

Merry Barua: What India currently lacks in terms of schooling is attitude. And it’s not just to do with autistic people, it has to do with any disability. The thing is we, as people with any disability, are a minority in a majority community. And it is the majority that has to make a place for us. It’s the majority that has to accept that these are people who have as much right to an education in life and to recreation as they do. We don’t have a very inclusive mindset. We say we do, we did, but we don’t anymore. It’s not that the whole world is like that. There are many countries where the mindset is still very, very inclusive.

So we are very judgmental of anybody different in any way. I know when I moved to Delhi 30 years back, anybody from the northeast was looked at as these weirdos. They still are. Because they simply have a different culture. Similarly, disability is also a different culture. So the problem in schooling comes from this unwillingness to make changes. Attitude is the most important.

The other one is the way we teach. Ultimately it is the school that fashions how the academics will continue in higher education. We have The NEP (National Education Policy), for instance. It has wonderful suggestions for all of us to follow. Do we really follow them? Even before the NEP, the earlier the policy on education that we had, it talked about making learning more experiential.

Do we really do that? How many schools do that? I know that most schools just open a book, nowadays, they often open a smart board and they go through the text and that’s it. There is no doing. And especially in the early years, especially in the early years, if you are not teaching children how to learn by doing, we end up churning out people who are not really very good at a lot of things. And we are doing that.

We keep talking about people who’ve gone to IIT and overseas and done a lot of things. They have mostly done it on their own. They’ve gone to these coaching classes, they’ve got into IITs, they’ve managed on their own, and then once in the IIT, maybe they’re teaching them well. But the ones getting in, it’s not because the school has done a great job.

If you are teaching children numbers and you just do dots in the paper. You don’t take them out and say let’s collect these leaves and count them before we put them in. Or there are six cups here. Put one spoon in each cup. Why do you think most Indians hate math or most people in many places hate math? Because it’s not taught the right way. Math is something we use in life all the time. We are constantly calculating, adding, putting in, whether it is in a home or kitchen or while shopping. But people hate it because of the way we teach.

So, if students with autism were taught the right way, they would learn. The thing with autism is they need a very concrete way of learning. They are great at mugging up. As they have fabulous memories. They will mug up, but that mugging up will help them till a certain class. After that, it doesn’t work. You have to have an understanding. And whereas for a lot of us who are not autistic, we have not been helped to understand the concepts when we are young. But because our minds are not as literal, the penny eventually drops.

For a lot of autistic people, early learning has to be very concretized, and very direct. And if you do that, all children, even blind students in your class, will learn if you make it very concrete. Even kids who have learning disability will learn. But we don’t have that because education is now a business.

Earlier people started schools out of passion. Now, we start schools to make money. We would rather spend a lot on air conditioning and fancy classrooms. I’m not saying have bad classrooms, but you don’t need to have air conditioning in every classroom and every space in the school. And that is what we want to spend on, rather than spending on enabling students to learn.

What happens when you make schools like that? Every room and every place in the school is air-conditioned, you are creating people who will eventually become policymakers because these are people with money. And to become a policymaker, you usually have to have money. It’s mostly the privilege that gets you there.

If you have such privilege, will you ever understand how 80% of the country lives and you’ll be making policy for them? So it’s not just disabled people who get affected, it’s a wider population that gets affected.

Besides schooling, what else do parents lack when it comes to a support ecosystem to raise an autistic child?

Merry Barua: Whether it is school or whether parents, they have to spend a little bit of energy, and get themselves some training. This is because the autistic brain works very differently from the neurotypical brain. And it is something that gets hard for parents sometimes to understand. Some parents manage to figure it out and do a great job. But for a lot of parents, it is a little bit difficult. They don’t quite know what they should be doing.

Ideally, parents should get themselves a little bit of training. Unfortunately, the Internet is full of a lot of great information and a lot of rubbish. So it’s hard for parents to figure out which is the good information, and which isn’t. Hence, talking to organisations like ours will help.

So it’s very important for parents to get access to information that will help them support their children and schools as well. And I must say, we work with a lot of schools where we conduct training for them, training for their teachers to help them understand how they can support autistic people in the classroom. In fact, the methods we suggest, as I said earlier, would help people with other learning disabilities as well as other conditions, because what we do is help them understand how to keep communication very clear, which is very important for autistic people. Communication. No sarcasm, none of all of that. Very direct, clear, specific communication.

Make the communication and whatever you’re doing visually clear, providing predictability so that the child knows what is going to happen, and not making sudden changes without warning, because autistic people have difficulty with transition. Many of us do, right? But for them, it is much more challenging.

Parents need some guidance on how to do these things. And schools do too. And the training we do with mainstream schools is on this. Things that they can do to be able to include autistic people in their classrooms in a manner that they learn. A lot of schools have autistic kids in the classroom just there because right to education access. In such cases, the focus is not on the education. The autistic students will just sit there, and the school will have somebody mind them. When they’re in the 7th or 8th class, they are taken out of those schools because they’re not learning anything. This is the reality of what is happening. That’s the reality. But schools that really want to support them do come and get training so that they can do a good job of supporting autistic people.

And mind you, there will always be some autistic kids who would, despite the school not supporting them, will manage to get through. Because maybe they have figured out, maybe, first of all, the learning styles are more typical. And some of them figure out how to cope with the situations in the classroom, maybe because sometimes the parents have figured it out and supported them.

Autism is a spectrum disorder, indicating that symptoms can vary among autistic children. How can awareness be effectively raised in such diverse cases?

Merry Barua: Yes. Two autistic people will not have the same behaviours, but the behaviours are all manifestations of the same core differences in the brain that they have from the neurotypical. So, for most people, an autistic person is somebody who doesn’t look you in the eye when they are speaking. Or autistic people will have a lot of stimming or they will not speak at all. That’s not correct.

This is true of all disabilities because, in cases of blindness, not everyone is blind in the same way. Some are totally blind, but some have low vision. But they have almost the same challenges as people who are totally blind. And people think, because they are wearing glasses and they’ll be able to move around, they don’t have any difficulties. And that’s not true.

This is the reality of all disabilities. I could have cerebral palsy and I could have some difficulty in wearing my clothes, but otherwise, I’m managing okay. I may have cerebral palsy, and one of my muscular challenges would be that I have very slurred speech. So, people look at me and think, oh, intellectually I am not capable. I may have cerebral palsy, and I may be in a wheelchair, but able to speak clearly.

Every disability manifests differently. The thing with autism is, at first glance, physiologically, when you see the person, there doesn’t seem to be any disability. It is when the person starts speaking and interacting that you see the differences.

In some people, there might be. The person doesn’t want to speak. In another one, they might be able to do everything and just seem very eccentric and different. But the thing is that the way they interact with people would be different. There’ll be some who would interact kind of okay, you wouldn’t be able to make out, but they are doing everything to kind of manage and interact well. And they’re having a major struggle inside, which we can’t see. They are struggling to be able to interact, to not do anything that people would think, oh, why are they so weird? Because they know people would judge them. So, they’re constantly masking. They also have similar difficulties as other autistic people. But they have figured that I can do these. But then it’s extremely draining.

And then you will have people who’d be flapping and jumping. Those are the ones that people will say, oh, they’re autistic right away. But there’ll be many others who will be able to speak to you like anyone else, who would be able to interact like anyone else but also have autism. And they are the ones who often have a lot more challenges. They have mental health issues because they’re constantly trying to pretend to be something they are not. It’s a very stupid example to give, but it’s like a blind person pretending or trying to pretend that they can see so that people will have to accept them. It’s the same kind of challenge.

I point that I want to make is that whether the person is flapping and jumping and non-speaking or somebody who’s speaking much, that does not determine the intellectual ability. You could have somebody who’s doing all kinds of stuff, but their mind is very clear.

People often judge from the way they see, and that happens with cerebral palsy. Also, if somebody in a wheelchair has very slurred speech, people presume that they cannot do anything. And the same happens with autism as well. So, if someone has a lot of stereotypical behaviours, people presume that there’s not much intellectual ability in there. It is very important to keep in mind that one must not judge an individual from the outside. One should just presume that every individual has the capacity and take it from there. And that’s what schools have to do. Because schools often make up the assumption that, oh, this kid can’t learn. And parents too do that sometimes. Never make that assumption because you do not know what is there in that child or that individual.

How can we ensure that people with autism find a place in the workforce in this increasingly competitive society with diminishing resources and job opportunities?

Merry Barua: The way to ensure this is by the workforce being willing to make the accommodations required for them. Just to draw a parallel, there was a time when women were considered stupid. They were considered unfit for the workforce. But the reality is women can do everything men can do. We may not have the physical strength same as them. Even that cannot be said about all women. There are some who are far more physically strong than many men.

But women had to fight for so many years and they’re still fighting. People presume that they will not be able to do well. And because people have this assumption, and we are in a very patriarchal society, we do know that there are women who do not get the promotions that they should get.

That’s a reality. They don’t get the promotions that they should get. If there is a male colleague and a woman colleague with the same qualifications as a male who gets it, there are many studies. I’m not just saying it. Many studies have been done that have shown this. It is the same with disability.

We are too rigid and stuck in the way we are. And when the government waves a whip, as happened about 15, or 20 years back, organizations started putting in ramps so that wheelchair users could go in. People fought like crazy because they didn’t want to spend that extra money. Because you’d have to spend maybe another 60-70 lakhs to put a ramp and things like that. But now it’s become a part of how it should be.

Similarly, with blind people, people fought about not having them in the workplace and stuff like that, and now they’ve realized that and they said, okay. And they spend a lot on the software that makes it possible for a blind person to be able to contribute like anybody else. And they’re brilliant blind lawyers and doctors and all kinds of stuff.

With autistic people in the workforce too, you have to make the accommodations. And for them sometimes it’s very simple things like giving visual information rather than just verbally giving the information. Make the information visual. Have it written down. Don’t make sudden changes in what the person has to do. That’s an important thing for autistic people. Tell them a few days in advance. They need that.

Autistic people are working everywhere. There are autistic journalists, doctors, lawyers, etc. And for those who are very obviously autistic, many of them have joined workforces. And the companies often say that they are some of the best people that they have because you see, they don’t go around gossiping and wasting time. Because for an autistic person, if this is what I have to do, I’m going to focus on this. I’m not going to do so many things simultaneously. Nevertheless, that should not be the reason why companies should have them. Companies should have them because they make as good employees as anyone else. You just have to find the right fit and go with an understanding of rights and willingness to make the accommodations that would be required to be able to work like anyone else.

What are the main challenges for individuals with autism and their families in accessing education and healthcare in India?

Merry Barua: Experiences are mixed, but a lot of them do have not very good experiences. Now what happens is mostly in the government hospitals, where a large majority of our population go, they are looking at so many patients that they don’t have the time. So that becomes one challenge because sometimes our kids need more time.

The other thing, the wait is enormous and completely unpredictable. Even when you’re going for, say a disability certificate to a government hospital, one doesn’t know how long one has to wait. Sometimes the wait is two or three hours long. And like I said, autistic people need a certain amount of predictability. You have this kid with you, you don’t know how long you’re going to wait with him. There is absolute chaos in most government hospitals. So, it’s an extremely harrowing experience for not just the family, but for the autistic individual too.

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