Autism, here I come

I went to such an inspiring focus group panel discussion at my work, Action for Autism (AFA), which discussed current problems India is facing in the field of Autism advocacy, research and training -- and future solutions to these problems.

I got to meet some really cool people! A representative from Autism Speaks (a US non-profit) was there and spoke about a current project that deals with translating some of the instruments used to detect Autism, to a culturally appropriate method that would work in India.

For example, he was saying that one of the methods to detect Autism that one might use in America (there are many detection instruments) would be to place a kid in a birthday party and see how he behaves. Similarly, in India they might also use the same technique: place an Indian kid in a birthday party and see how he behaves. BUT, how the parties differ due to cultural differences might be leading to different detections of Autism. What is considered "Autism" in America might be different than "Autism" in India. So, we discussed the importance of standardizing research methods in the field.

Being the research geek that I am, this was so awesome! And so public health!

Heard from a lot of other really smart people - representatives from Autism organizations from all over the country were there. It was so inspiring to be a part of the discussion.

And yes, if I can be so bold as to brag about how I was a "part" of the discussion:

I brought up a question regarding if there was a national campaign to increase knowledge about Autism on a broader perspective. Yeah, I know that really big advertisements that have large reach have less effect. But they're great for awareness. And awareness of the mass community - most of who aren't educated and have no clue about stuff like this. So I asked "India has all these billboards about HIV and pollution and other health problems. Why haven't we created a national health campaign about Autism?"

Merry Barua, the director of AFA, told me that this was primarily due to funding. But then - the idea of piggybacking off of the current media spotlight on Autism was raised. There's a new movie coming out next year called My Name is Khan where Shah Rukh Khan plays an Autistic guy who is accused of being a terrorist in post-9/11 America. So, we might use that to generate a national campaign for Autism awareness, write to different newspapers, educate more parents in rural areas. Everyone in India (regardless of religion, SES, urban/rural locality - will have heard of Shah Rukh Khan's new movie. So, let's use it for public health! It's just like my PM 526 Health Communications class - except in real life so it's way cooler.

I also got to meet with Tamara Daley, who also did her Fulbright in 1995 with AFA. She gave me some really great tips on my research project. There's a new show in Zee TV called Aap Ki Antra, which is about this girl who has Autism which has generated really positive feedback from the community, and especially for families that have Autistic children. The problem with this TV show is that it's meant for entertainment purposes and sometimes steers away from the educational standpoint.

I've decided to re-shift the focus of my project to: The effects of Indian media on the perception of Autism. I want to kinda look into this more: as a result of watching the show and other forms of media, what are some of the misconceptions, thoughts, stigmas, etc that exist. And what's the feeling of families and research professionals behind this show?

Who knows - maybe this will lead to a Bollywood Health and Society? Oh, I dream big dreams.

xx