Nearly 13 million people in India suffer from autism
CARE NEEDED Parents of young children with autism go into denial, refusing to believe the diagnosis, leading to delays in therapy to help the child integrate into mainstream schooling
1 in 89 children between the ages of two and nine years in India suffer from Autism Spectrum Disorder (ASD). Based on the 2011 census data, this will mean 2.2 million children in that age group in India are autistic. If extrapolated, this means at least 13 million people in India live with the condition.
But, what is Autism Spectrum Disorder?
ASD is an umbrella term for people living with development disorders that impairs communication – speaking, gesturing and listening – and makes them have limited interests or repetitive behaviour.
ASD remains a very misunderstood diagnosis.
“There is a stigma attached to the disorder. What people need to understand is that if diagnosed early and the child receive adequate help then they can contribute to the society,” said Shefali Gulati, chief of child neurology department at All India Institute of Medical Sciences.
Not responding to cuddling
Shying away from being picked up or held
Not making eye contact with people, even parents
Not smiling
Not responding to their name
Not acknowledging toys or other items shown to him
Don’t speak at least 1 word by 16 months and 2 words by 24 months
Lose vocabulary they had
Have difficulty in sharing toys
Become fixated with specific objects like a certain toy
Actions are repetitive
Sleeping problems like difficulty in falling asleep, erratic sleep SHUTTERSTOCK
Children may become moody, arrogant and non-communicative
Attention span may decrease
More insistence on sameness or orderliness
There may be onset of seizures – around 11% people with autism spectrum disorder have seizures
Pubertal changes may cause distress the family who has autism. “The risk of a second child being autistic increases by 7% if a couple has had an autistic daughter and by 4% if they have had an autistic son. The chances of having an autistic child increases by 25-30% if both children are born with autism,” said Dr Gulati.
“This, however, does not mean that there has to be a history of autism in the family in previous generations. But, it has been established that in 10–15% of families with autistic children there is history of behavioural problems,” she added. Awareness, acceptance of diagnosis and receiving proper care at the right time are some of the barriers to diagnosis and treatment of children with ASD.
“Awareness, even among physicians, was very less even 20 years ago. Also there were several nomenclatures for various conditions. This has changed over the time. Also, there is no objective blood test or scan to determine whether a child is autistic. A specialist can just observe the child and put 2 and 2 together,” said Dr Chugh.
Parents also refuse to believe in the diagnosis, leading to delays in therapy. “The problem is now there is Dr Google. Many parents Google symptoms and say that their child is not autistic. However, every autistic child shows different symptoms and parents are not willing to accept the diagnosis,” he said.
And even after children have been diagnosed, integrating them to the mainstream education system can be a challenge.
“Special educators are needed and various resources to train the children in areas that they face difficult in are required. However, there is a dearth of them in India,” said Dr Mukta Vasal, chief child and adolescent psychologist and co-founder of ‘Mom’s Belief’.