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4/8/19 - Autism Awareness in India

As you may recall, in my April, 2017 blog post I wrote about a study that found developing countries to have lower rates of reported Autism Spectrum Disorder (ASD). In the US, 1 out of 45 children ages 3-17 are diagnosed with autism, while in developing countries, such as China, only 1 out of 9000 children ages 2-6 are diagnosed with autism. I proposed many theories as to why such a discrepancy exists. On one hand, this difference could be attributed to fewer diagnoses but not actually fewer incidents of autism due to a lack of awareness or cultural differences. Alternatively, there could actually be fewer cases of autism in these countries due to better genetics or stronger immune systems.

As there is little research on this topic, I decided to coordinate my own survey to gain insight into why there is a divergence in autism rates between developed and developing countries. In particular, I decided to compare autism awareness levels between the US and India. Similar to China, studies have indicated low autism rates in India at 23 out of 10,000 children. To begin, I created a survey with questions that would both assess people’s levels of autism awareness as well as determine their demographics. Then, I partnered with a hospital in New Delhi, India, where there is a high flow of patients from all classes, to distribute this survey. Administrators at the hospital gave the survey to all incoming patients or their families at the hospital and translated the survey into local languages when necessary. Over a period of 2 months, I was able to collect over 500 survey results between the US and India.

The survey results depicted a stark difference in autism awareness levels between developed versus developing countries: 100% of survey participants in the US had heard of ASD compared to only 12.6% of participants in India.

This data was found to strongly correlate with the education levels of Indian participants. Less than 4% of participants with less than high school education had heard of ASD while 23% of participants with bachelor’s degree were aware of ASD. The awareness improved for participants with post-graduate or professional degrees where 63% of them had heard of ASD. That said, many of these post-grad/professionals included scientists and doctors. Interestingly, there was also a slight difference in autism awareness between men and women, where a higher percentage of men had heard of autism. According to census data, only 4.5% of Indians had Bachelor’s degree or higher education whereas 32.6% had less than elementary school education.

Next, of the participants who had heard of autism, I asked them more in-depth questions to determine how much they actually knew about the disorder. First, I asked how they would describe autism. A developmental disorder was the most popular answer among US participants (62% for US vs. 41% for India) whereas psychiatric disorder was mentioned most by Indians (43% for India, 25% for US). However, 3% of US participants and 11% of Indian participants incorrectly classified autism as a physical disorder. Then, I asked when do first signs of autism typically appear. 82% of US participants and 70% of Indian participants chose between 2-5 years of age, while 8% of US participants and 18% of Indian participants chose 5-10 years of age. Notably, 5% of Indian participants believed autism was seen at 20+ years of age, while 0% of US participants chose that option. Questions related to what caused autism prompted some surprising results. 25% of Indian participants vs 3% of US participants believed pollution caused autism. 2% of Indian participants thought a lack of education caused autism. 2% of US participants thought vaccines caused autism, probably due to a debunked theory that became popular in recent years.

In order to assess ASD prevalence, I asked participants who were familiar with ASD if they could estimate the percent of people with autism symptoms in their communities. Most participants from both US and India estimated between 1 – 10% of people in their respective communities exhibited autistic behaviors. Furthermore, for a select group of participants who had never heard of autism, my partner at the hospital then explained common characteristics of autism. Surprisingly, all of these participants were able to recall people who they had met that met these criteria, and then the majority (82%) of these participants estimated that between 1-10% of the people in their community were autistic. This data suggests that autism prevalence may not actually be lower in developing countries such as India. Rather, as I hypothesized, the lower recorded rate of autism is likely due to a lack of autism awareness.

Finally, I asked participants what they thought should be done to improve awareness. Many of the US participants suggested ways to help autistic children feel more accepted; some suggested keeping autistic children with other students, or others suggested having classroom lessons teaching that autistic children are like all other students. Meanwhile, the India participants focused on raising awareness to begin with. Many suggested educating mothers through OB/GYNs and pediatricians and providing training to elementary school teachers and nurses to identify first signs of ASD so that parents can get their children appropriately diagnosed by qualified physicians. Others suggested more movies and TV shows to educate people on autism, as lately there have been several Indian movies on varying diseases and disorders that help raise awareness. Even the difference between suggestions of US and India participants highlights that the two countries are on very different levels of autism awareness. The US is at much more of an advanced stage where we can focus on better integrating and accepting autistic children, while India is at an earlier stage where we need to focus on teaching people about autism and getting children diagnosed.

The participants suggestions on how we can improve awareness helped me come up with a plan for my next project. Based on all the data I collected, my next steps are to develop educational material to distribute to preschool and elementary school teachers and nurses on autism symptoms and treatments, as these are the people who are most capable of identifying early signs of ASD and spreading autism awareness on a greater scale.

This work was presented as a poster at a European Autism Congress conference held in Zagreb, Croatia on March 14-15, 2019.