#6 - Building awareness about Fragile X syndrome in India | Veena Naren

In our sixth episode of Global Dialogue Series on Neurodiversity, we speak with Veena Naren, a special educator since 1996 and a parent of a 21 years old neurodiverse individual. Veena has been a strong advocate for building awareness about Fragile X syndrome in India and breaking the gender bias for mothers of neurodiverse children. Veena has helped many parents by sharing her own experience of raising her son Varun with a positive attitude and bringing out his capabilities to become a self-reliant and contributing member of society.?

Fragile X syndrome is a genetic condition that affects a range of developmental problems like learning difficulties, behavioral challenges and health. Nearly 200,000 to 400,000 children in India are affected by Fragile X syndrome, but most remain undiagnosed, even though diagnoses just require a simple DNA blood test.?

Fragile X syndrome is often misdiagnosed as autism, even for Veena’s son Varun, who was earlier diagnosed with autism, only at age of 11, they came to know that he had Fragile X syndrome. While there are children with both autism and Fragile X syndrome, Veena and her family have been working together to build awareness about Fragile X syndrome in India and encouraging parents to diagnose for Fragile X syndrome even if the child was earlier diagnosed with autism, as Fragile X syndrome can also affect the parents with premutation condition in older age, who can develop seizures similar to Parkinson’s disease.

One of the primary reasons that Fragile X syndrome in India still remains undiagnosed is because it’s a genetic condition, it becomes a taboo for a lot of parents, especially the mothers, who are most often unfairly blamed for their child’s condition. Even as we advance as a society, the taboo still remains at large. Veena tells us that the society needs to be aware that Fragile X syndrome can be passed from both male and female carriers. When a boy is born, he takes the X chromosome of the mother and Y chromosome of the father, but when a girl is born, she takes the X chromosome from the mother as well as the father, if the father is a carrier of a Fragile X syndrome, it can be passed down from him.?

Since 2011, after reading an article about Fragile X syndrome that helped with Varun's diagnosis, Veena and her husband Naren realized that there was much to do on building awareness about Fragile X syndrome in India, they funded a doctor to go to the US and get trained to better help children with Fragile X syndrome and their parents. They also helped to open the first clinic in India for Fragile X syndrome.?

Veena shares how the support of her husband has been immense in this journey, where both of them equally took the responsibilities and shared the work. But unfortunately, that is not the case at large in most households in India, there have been cases where the father abandoned the child because of their challenges or just provided financial support. Families should understand that it’s a collective responsibility and not just the mothers, while mothers are resilient does not mean they have to handle this on their own.?

Every child is greatly influenced by the choices of their parents in their early age. In a country like India where academics are given so much importance and most children are forced to participate in that race and expectations thrust upon them, there’s no exception in this whether neurodiverse or neurotypical. Veena strongly believes parents should not compare their child with others, each child is capable and it’s okay if they are learning at their own pace.?

While many parents’ benchmarks for their child is to complete middle or high school, Veena and Naren took a different path for Varun. They drifted away from the traditional academic path and focussed on skill-based activities, identified his personal interests and groomed that interest. Varun had an inclination for baking and doodling, they prioritized those skills, and today Varun is a successful entrepreneur who bakes and doodles.?

In 2014, when Varun launched his first brand “Varun’s Delight”, he created his own logo. He started getting orders for his baking gig, built his customer base purely out of his talent. Similarly, Varun’s doodling skills helped him to create his second brand “Varun’s Creation” where he sells products based on his designs and also takes on caricature gigs. In every product of Varun, you can also away find a small note on Fragile X syndrome and building awareness about it.?

Neurodiversity has always been about embracing the diversity, the differences of each individual and their strengths. While the majority of society is focused on the academics race in India, there are parents like Veena who are paving the way for change, helping other parents to understand what is important for their child and their personal growth.