Awareness of Autism and Related Neurodevelopmental Disorders Growing in India!

Autism exists throughout the world and the number of individuals diagnosed continues to grow. Many researchers believe that most autism has a genetic basis. Therefore, there was tremendous interest in a recent nationwide series of presentations by researchers and clinicians from the United States led by Dr. Randi Hagerman at the world-famous UC Davis MIND Institute in Sacramento, California. Dr. Hagerman and her team used the opportunity to highlight fragile X syndrome, the most common, known, single gene cause of autism. Presentations took place at AIIMS, NIMHANS, Nanavati Hospital, Bhatia Hospital and the combined attendance included hundreds of doctors, therapists, educators and parents.

Speakers talked about the many evidence-based interventions that now exist for those with the syndrome. New medications, therapies and educational techniques are making a difference in the lives of those who are affected, allowing them to more fully participate with others in their homes, schools and communities. There was also discussion about how improving the rate of diagnosis in India might be challenged by some Indians lack of understanding and feelings about inherited genetic mutations and intellectual disability. Addressing this challenge, and many other important issues surrounding Fragile X, will be the work of the Fragile X Society-India, said Shalini Kedia, founder and chairperson.

Many new alliances were formed between Indian and American professionals that will help advance the science leading to better diagnosis and treatment going forward. The Fragile X Society-India is also building on the success of the awareness and education tour to advocate for more fragile X clinics throughout India. With fragile X syndrome estimated to affect hundreds of thousands of Indians, and with millions being carriers of the fragile X genetic mutation (and, therefore, at-risk for developing one of the Fragile X-associated Disorders that can affect adult carriers) the presentations were timely and of great interest to those in India who are engaged in diagnosing and treating those with genetically-caused intellectual disability.

You can learn more about Fragile X in India by visiting the Fragile X Society-India website at http://www.fragilex.in