Autism is one of the fastest-growing neuro-developmental disorders in the world, affecting the behaviours and development of children. One in 68 children have autism spectrum disorder, and according to Autism Speaks, a US-based advocacy organisation, the number of children diagnosed with autism this year is predicted to be higher than those diagnosed with cancer, diabetes and AIDS combined. Despite it being one of the most widespread disorders in the world, it remains shrouded in mystery and open to misinterpretations. April 2 has been declared by the United Nations as World Autism Awareness Day. To throw light on this disorder, every year on this day, over 18,000 buildings, monuments and landmarks across the world light up blue as a way to increase awareness about autism, and the need for early intervention and support for children with autism.
Children with autism are often misunderstood as they struggle with social interactions and forming friendships. Ummeed, a non-profit organisation set up in 2001, aims at helping children with autism and other developmental disabilities reach their highest potential. Every year, Ummeed plans a campaign to light up well known structures in the city of Mumbai blue. Last year, the Taj and the Army and Navy buildings were lit up in blue light on April 2, and this year, the NGO hopes to have iconic landmarks like the Bandra-Worli sea link, Jaslok hospital, the Royal Opera House and other buildings lit up similarly.
We spoke to Dr Koyeli Sengupta, developmental paediatrician and director—Autism Intervention Services, Ummeed Child Development Centre, about the causes and characteristics of autism and how the NGO helps kids with this disorder.
Autism and awareness
Dr Sengupta says, “Temple Grandin, a professor of animal science in the US and celebrated autism spokesperson, has spoken on her personal experience of autism. In her own words, ‘having autism doesn’t mean being less, it just means being different.’ I think that’s what this day signifies for a lot of families and individuals with autism. But in many countries, autism is still associated with a lot of stigma. We hope that commemorating this day will make people aware that such a condition exists and help them to further understand it.”
Causes of autism
There is no known cause where autism is concerned, but research shows that there are genetic changes involved. Dr Sengupta explains, “Along with genetic changes, there might also be some environmental factors that might lead to the expression of autism. These factors could be present before birth or immediately after birth. So it could be illnesses in the mother, chronic depression, it could be associated with hypertension, and diabetes in some. But there are also lots of mothers who show these signs, but don’t have a child with autism. In the past, there has been a lot of furore about autism being connected with vaccines, but it is absolutely not true and this myth has been debunked.”
Characteristics of autism
The root of autism is neurological, and its presentation is in different areas of development. The areas of development that are affected are children’s communication, social skills, and behaviours. Children with autism may have very repetitive behaviours. Dr Sengupta says, “Some earliest signs of autism can be detected if the child at, say, two years isn’t talking yet, or says very little as compared to other children, or doesn’t react when his name is called. These children struggle with higher communication skills; for instance, a 10-year-old child with autism might be interested in dinosaurs or racing cars, but may not be able to talk to anyone about anything other than his interests.”
Support and care
The best approach to support and care for children with autism is to diagnose and intervene early. Dr Sengupta affirms, “The earlier we start intervening, the better are the outcomes. When I say intervention, it’s not in the form of medicines or injections.” She further adds, “Children with autism are very different from each other. No two children with autism are similar. The therapy and intervention that works for one child may not work for another.”
How Ummeed helps
Ummeed helps children with autism in four ways:
1. Provide clinical services: Therapy for children and their families. Train parents on how to work on their child’s communication skills, develop their behaviours, and understand them better.
2. Train professionals: Ummeed conducts training for doctors on how to diagnose children with autism early. They also conduct a programme called Autism Intervention Training Programme, which is one of the very few programmes available in India, that trains occupational and speech therapists to work with children with autism.
3. Run campaigns: Ummeed runs a campaign each year on April 2 to create awareness about autism in India. The campaign theme this year is ‘Identify, Understand, Support.’
4. Conduct research: Collect data, evaluate it, and present it so that other countries and research models can follow this work