By Shruti Pushkarna
What do Albert Einstein, Emily Dickinson, Tim Burton, Charles Darwin, Bobby Fischer, Bill Gates, Jerry Seinfeld, Tim Burton, and Elon Musk have in common? The answer is ASD or Autism Spectrum Disorder. It is a developmental disability caused by differences in the brain. People with ASD often have problems communicating and socializing, they may display repetitive behavior or restricted interests. But they also have their unique strengths and abilities. And all the personalities mentioned above are proof that although it may be challenging to live with autism, but people on the spectrum can accomplish great things.
Source: Freepik.com
April is Autism Awareness Month, and you would have come across several news stories around autism awareness, inclusion, numbers in the past couple of weeks. But do we really know enough about autism? Are we accepting and welcoming of people on the spectrum in the mainstream? Does India have enough services catering to the needs of autistic people?
Merry Barua
I posed these and several other questions to Merry Barua who is credited with initiating the autism movement in the country. Merry gave birth to her son, Neeraj in 1981. It took a new mother months and years to understand her autistic son’s needs, traits, and interests, to ultimately devote herself towards creating awareness and a conducive environment for thousands like Neeraj. Merry Barua is the Founder Director of Action for Autism, an organisation dedicated towards building a hopeful future for autistic children and their families. She has also authored many books on the subject.
In this interview, she talks about her journey as both a mother and an activist, the transformation that people and organisations working on autism experienced over the years and how the media contributed, impacted, or lacked.
Q: Tell us a bit about your first encounter with autism as a young mother.
A: When my son was little, I had no knowledge of how a little baby must be like. He was my first child, and I had no experience. He reached all his physical milestones, except that he did not speak, but everyone assured me that boys speak late. He was very cranky as an infant. I was barely able to breastfeed him because he did not suck. There were other challenges, he would drop things out of the window. I couldn’t explain to him that this is not something that one does. As he grew, he barely slept at night. When he started going to the playschool, I noticed that all the kids were playing together but he would be hanging around on the fringes. I thought he was shy. At the end of the year, when they sent us the exercise books, all of them were empty except for the colouring book where the crayon had been rubbed repeatedly in one spot in the centre of whatever the outline was. Initially I thought he was a slow child. But there seemed to be something more and I tried asking his paediatrician, but he said there was nothing to worry about. So, life was quite challenging. And I felt there was something wrong in my parenting. One of the bad things I did was that I followed Benjamin Spock (American paediatrician) who encouraged to say ‘no’ and give them a little spank and I would do that. And I know now that those are terribly wrong things to do.
Q: You began with championing autism rights as a mother, and later it translated into a national movement. Tell us a bit about this transformative journey.
A: After I got a diagnosis, I realised that nobody had even heard of this word ‘autism’. There was nothing available. I got hold of one book by Lorna Wing.
Autism is not a simple straightforward kind of disability. You have to really put in an effort to understand it. For example, when people would ask me, I would say it’s a difficulty in communication and socialisation. And people would say so what, there are many other shy kids who don’t play with anyone. And I didn’t have the understanding to explain the pervasive nature of social challenges that my son was coping with. I visited many schools for the disabled and I realised that there was very little or almost nothing people understood about disability, forget autism. So, I started writing. I wrote a few articles in magazines and newspapers with the aim to get people to at least know the word ‘autism’. Around the late ’80s, the film Rain Man had been released in India and a lot of people who watched the movie didn’t get that it was about a disability. So, I printed out a little piece of information and I went to all the local video parlours asking the owner to stick it on the cassettes to help people understand. I also started to bring about a journal called Autism News. My aim was to reach families and help them. These were all the small things I did to create awareness. I had a young girl whose sister brought her over, asking for me to work with her. I did and then another mother came with a boy. By this time, my son was 12. This is how the school started. My aim was to show through the school that these are children who can learn and progress just like other children. Because I’d experienced that with my son during his home programme.
It wasn’t just about my child, it was about this whole population of autistic people who were not getting the right services they required. It was important to ensure that autism was recognised in policy. Also, in many places the understanding is that the way you teach kids with intellectual disability is how you also teach kids with autism. It’s like saying that you teach deaf and blind kids in the same way. Except it’s not! They’re completely different disabilities. So that understanding had to be pushed through. So, one of the things that I struggled with was to get the Rehabilitation Council of India (RCI) agree to start a training of teachers to work with children with autism. And that struggle took me seven years. As I began to understand autism, I saw there were so many children who had autism, but they were misdiagnosed. I was often told that I was trying to make autism fashionable! I could see that this was a population that desperately needed services, laws, needed things to change. We also realised that we had to do a lot more work on awareness, so we did a lot of concerts with popular musicians. I wrote the first book on autism around 1997. Then we write a manual for paediatricians. So, one thing led to another and that is how the whole movement started off.
Q: Autism has been treated in different ways in literature and films, some close to factually correct, some stereotypical, some totally absurd. A classic example being Rain Man, people assume all persons on the spectrum are mathematical wizards! Then there was My Name is Khan, I am Sam, Who’s Eating Gilbert Grape and so on. How do you respond to some of these yesteryear productions? Do you think they have led to more stereotyping or have managed to educate the ignorant masses?
A: Yes, I know there have been a lot of films and the depiction hasn’t always been the best and they have created a wrong impact. But at the same time, I deeply appreciate a lot of the films. For instance, ‘Rain Man’ when it came out, it was the only film that was really talking about autism clearly. And I know that’s not the kind of autism that my son has. But it was a film that gave us an understanding of the different kinds of autism. And it’s an excellent depiction of an autistic person of a particular kind. As for ‘What’s Eating Gilbert Grape’, I thought it was fantastic too. You cannot show every kind of autistic person in a film. I liked Gilbert Grape especially because the autistic person was not the main character, he was just the sibling. I thought ‘Barfi’ was cute, but the ending was unnecessarily happy. Like the kid in ‘Taare Zameen Par’, why did he have to win the competition. It’s like when you have a disability, you must have something to redeem yourself. That bugs me. Why can’t disabled people be like regular people and have happiness, failures, sadness, successes, everything doesn’t have to end on a happy note. But I guess the more the merrier because they create awareness. There’s so much stigma that is attached to disability in our country and if these movies address that stigma in some ways, I say let it be.
Q: But today there is a lot more content that is produced from a more informed position, representing rather than misleading. To cite a few examples, there are shows like Atypical, The Good Doctor, Extraordinary Attorney Woo et cetera. What do you feel about this shift in portrayals?
A: The early portrayals have been able to create some awareness. For instance, if we took our kids out, someone approached us asking if these kids are like ‘Taare Zameen Par’, and I would say yes. Because it didn’t matter, to that person, there was no distinction between a learning disability and autism. All he knew was that these people are different, and he was trying to be good. And I think that’s what matters ultimately. As long as people accept them for who they are and want to include and help them. Having said that, the current lot of OTT films and series are fabulous, including the ones that you have mentioned. So there has been a big shift, especially the stuff that’s coming from the West, if not as much in India.
Q: Action for Autism, can you tell us a bit about the organisation’s vision and how the work has evolved through these years?
A: Action for Autism was started with the objective of creating an environment which was supportive of autistic individuals and families. One had to change perceptions from them being hopeless, useless, violent children. And to do that one had to start services to prove that those perceptions were wrong. We started the school initially and then we moved to diagnosis, early intervention, teacher training, running a vocational centre and so on. And then moving to employment. The bigger shift which has colored all the work that we do is the evolution of our understanding of autism. We’ve learnt a lot from our colleagues with autism, as we have from autistic people who have written about their life experiences. As our understanding grows, it impacts our services.
Q: April is also Autism Awareness Month, this year being the 15th annual observance. How have you seen the awareness raising activities and engagements grow or transform through these years?
A: There has been a steady increase in the observance. Initially, we used to do an Autism Awareness month in December starting 2000 onwards and we did it across cities. Then of course Autism Awareness month was flagged by UN in 2008. Now, there are observances by organisations across the country helping create more awareness. There are also a lot of observances happening in smaller towns, but the reality is that awareness is still a long way to go. This is also a time when a lot of flaky therapies get majorly boosted by the people who propagate them. While there are a lot of walks, public events et cetera, there are also a lot of discussions, articles in the media that happen during this month. In earlier times, there was a lot of awareness activities. Now, the push is more towards acceptance of autism.
Q: You have written extensively in newspapers about autism, you even started a journal called Autism News, what according to you is the media doing right and what it has missed out on. What should change?
A: One of the good things is that the media is nowadays covering the condition. They suddenly seemed to have discovered autism as a worthy topic. In the entertainment media, there are series that have characters with autism, they try to portray people with lived experiences. But one of the things that happens with our news coverage is caricaturing, or a heroic portrayal. The language needs to change because it is ableist. The reporters who write the story, they are often people who don’t have much understanding of autism or even disability. Things like ‘differently abled’, ‘suffering from autism’, are indicative of very ableist language. The intentions are better, but because they come from an ableist perspective, the appropriate language is missing. But one should be happy that at least the media considers disability matters worth covering.
So why are we publishing this column on an A&M site? Well, we strongly feel that the media can dramatically transform the world of persons with disabilities. And this series can help bring forth issues that the media must champion to create a truly inclusive and accessible India. To write this column, we invited Shruti Pushkarna, a former journalist who is now a disability inclusion advocate based in New Delhi. Her views here are personal. To access the archives of her 70-odd columns, please visit: https://www.mxmindia.com/category/ columns/shruti-pushkarna/
If you have a view on the issue or would like to align with MxMIndia on this cause, write to us at editor [at] mxmindia.com.