Going beyond autism awareness

DR RADICA MAHASE

“I would never have brought my child to Divali Nagar before. This place is madness. It’s too much noise and lights and the crowd is terrible. It is not a place for children like my son. Once, a few years ago we came for a little bit before it got crowded but the smells and sounds triggered a meltdown and we had to leave after 20 minutes.

"We tried again last year but they were no activities that interested him, that he could really participate in. He was completely bored and we didn’t stay too long either. So generally we stay far away from any kind of event like this.”

These are the words of Melissa, mother of a ten-year-old boy with autism. Her son Kyle is very sensitive to loud noises and he hates crowds.

Anyone who has ever visited Divali Nagar will know that it is one of the most vibrant cultural events in TT.

For nine days before Divali, the National Council of Indian Culture (NCIC) hosts a massive expo with food, corporate booths, performances and folk theatre, amongst other things. Every single night there are multiple performances, large crowds and nerve-racking traffic. It all ends with a fireworks display on the night before Divali.

As the biggest Divali cultural expo in TT, Divali Nagar can be very educational and highly entertaining. Like all other cultural events in TT, it can also be a nightmare for those with autism such as Kyle, as well as for others with special needs.

This is the fourth year that Support Autism T&T had an autism outreach booth at this event.

In 2016 when we decided to do the booth, our main aim was to create an awareness of autism and to advocate for inclusion. We spent so much time educating others about autism, answering questions and generally disseminating information.

A year later we realised that many of the parents and caregivers who visited our outreach booth were desperately looking for opportunities for their children; they wanted to be able to take them to events like this and know that their children would be comfortable and would have fun.

Both last year and this year, we were so happy to welcome individuals with autism at our booth every day. Some parents came very early with their children and left before the noise and crowds. Those whose children did not have any issues with the noise and crowds stayed later.

In the midst of it all we realised that TT needs to go beyond awareness. As one parent said, “I need something real for my child. I don’t care if people stare or anything. All I care about is that there are opportunities for my child, that he can take part in different things, that he can have fun too. I want to be able to take him to events like this and know that there is something that he can take part in.”

As a nation, we have a long way to go in making any of our national cultural celebrations inclusive of those with special needs. Over the years even religious events have become noisy.

Sometimes we forget that not everyone can tolerate the noise and the crowds. While it is impossible to change the nature of the entire event to accommodate those with special needs, surely it is not impossible to create one aspect of the event that is friendly towards those with special needs?

In the case of Divali Nagar, the autism outreach booth is inside the

dome, away from the main stage and the corporate booths. It is accessible by wheelchair and it is in a quieter, cooler spot. Additionally, it was set up as a craft and colouring station to engage the children.

Parents are more comfortable bringing their children to Divali Nagar because they know that there is this small space where their child is not judged, not stared at, where their child can just be comfortable.

Melissa said, “I bring Kyle to Divali Nagar because I know that you all are here. You all understand him. He can run around, jump up and down, make whatever noises and you all don’t stare at him.

"Because you all understand him we feel comfortable to bring him.”

As we celebrate Divali 2019 we hope that more events will be more mindful and inclusive of individuals with special needs.

Happy Divali TT.

Dr Radica Mahase is founder/director, Support Autism T&T