Empowering parents & changing public attitudes – Meet the team behind SOCH-Autism Society of Punjab
When a group of mothers with children with autism came together in 2007 to form a support group, little did they think that they would start off a larger movement across Punjab. Read the inspiring story behind SOCH-Autism Society of Punjab.
In 2004 when Jalandhar-based Anjali Dada's son was diagnosed with autism he was over four years old. The late diagnosis was compounded by lack of proper intervention in her town. Anjali had to go to Delhi to the NGO Action for Autism founded by Merry Barua to acquire the skills needed to support her son.
"At Action for Autism I saw how children were getting support and training at a much younger age, much before my son was even diagnosed, and it was depressing. I had family support in Delhi and could have stayed there and continued with my son's care but decided to come back to Jalandhar and create something here with likeminded parents", says Anjali.
Anjali found a few other families with children on the spectrum including Kanchan Agarwal. Together, they founded SOCH - Autism Society of Punjab (Jalandhar).
The main course we have is Mother Training and so far, we have trained over 150 families. Some have gone back to their areas and are managing to continue with the child's homeschooling. We stay in touch with them online and support them with home plans. - Anjali Dada, Co-founder, SOCH - Autism Society of Punjab (Jalandhar)
Along the journey, both Anjali and Kanchan enhanced their learnings with courses in special education. They connected with experts and organisations in Delhi who now come to Jalandhar regularly and conduct sessions.
"We have built up a good network", says Anjali. "Some people reached out to us, including experts settled abroad. Like there's a speech pathologist in the United States who comes to our centre when she is in India and holds workshops and coordinates with parents".
Kanchan, who had to wait until her son was nearly five years old to get a diagnosis, is happy that SOCH is preventing other families from experiencing the same anxieties.
"I had to go to Delhi every month for my son Satyam's therapy", says Kanchan. "SOCH is now able to provide that to parents here itself, which means children are getting diagnosed earlier. We direct them to the right experts, and they get intervention and support much earlier and do not have the learning gaps our kids did".
Apart from supporting families, SOCH is invested in building larger public awareness and sensitisation. This includes workshops with the medical fraternity and in schools. They are also behind events like 'Light it up Blue' for Autism Awareness Month, which saw about 300 people joining up this year.
SOCH also partnered with Big Bazaar in the Quiet Hour initiative in Jalandhar. From sensitizing staff members to ideating on shopping guides for people with autism, SOCH played a big role in ensuring the initiative's success in this town.
Today families from across Punjab, Haryana and Himachal Pradesh come to SOCH for help. Among them is Ruchika Batra from Kapurthala.
"A doctor at a hospital in Kapurthala directed us here", says Ruchika, whose daughter has autism. "I was a part of the programme for mothers and learned valuable tips that help me to calm her down, understand her expressions, handle her in social situations, etc.". Ruchika has noticed a change in her daughter's behaviour. "She listens to me more now and follows my instructions. Her meltdowns are becoming less frequent as well and she has started communicating more".
SOCH is also occupied with finding avenues for older children and youth. In 2014, it started a vocational room where children of 14 and above are trained in skills like stock taking, packaging products, etc. Local companies support these efforts by purchasing them as corporate gifts.
"One thing that we can proudly say is that at least in Jalandhar today autism is a known term", says Anjali. Especially satisfying is the growing number of two-year old's walking into the SOCH centre with the right diagnosis. "Now there's a realisation that so much can be done in the early years".