As the world observes Autism Day on April 2, the awareness about the disorder (autism spectrum disorder – ASD) and measures to battle it are quite low, especially in India.
According to a study by a top child neurologist at All India Institute of Medical Sciences (AIIMS), at least one in 89 children aged between two and nine years have been diagnosed with autism in India.
An extrapolation of the data on 2011 census would mean that as many as 2.2 million children and 13 million people in the country live with the condition.
But, what is ASD? It is an umbrella term for persons living with developmental disorders that impair communication—speaking, gesturing and listening—and make them have limited interests or repetitive behaviour.
Diagnosis is still misunderstood very much, doctors say, and most parents in India do not have the resources or the support to bring up autistic children.
“There is a stigma attached to the disorder. What people need to understand is that if it is diagnosed early and children receive adequate help, then they can contribute to the society in some way or the other, they do not have to be dependent on others,” says Dr Shefali Gulati, chief of child neurology department at AIIMS, who did the study.
The easiest way to identify symptoms is to notice if a child “does not look at playthings being shown, if they do not give social smile, if they do not respond to their name, she says, adding that “Parents must consult their paediatrician and get a proper diagnosis done.”
Noting that parents are usually dismissive of such symptoms, Dr Gulati warned them against waiting. “Sometimes parents bring their child when they are five years old.”
Early intervention can help autistic children lead normal lives.
“Early diagnosis is the key. That way, the children can learn age-appropriate activities with help from specialists and psychologists. The children might not be able to learn these activities properly at an older age,” says Dr Krishan Chugh, director of paediatrics at Fortis Memorial Research Institute, Gurgaon.
Is it in the family?
The cause for autism spectrum disorders is still unknown, but it has been observed that boys are 4.5 times more likely to get autism than girls.
The risk also rises if there is an autistic child in the family. “The risk of a second child being autistic increases by 7% if a couple has an autistic daughter, and 4% if they have had an autistic son. The chances of having an autistic child increases by 25-30% if two 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 said.
A higher age of the father at the time of conception has also been co-related to autism, doctors say.
“It is a double whammy for the women. Mostly, they are blamed for having an autistic child and then they are designated as the sole caregiver,” Dr Gulati says.
“A very high percentage of the mothers of autistic children suffer from depression because they have to give up their career, they are tied to their home and do not get to go out, they do not get enough support in caring for the child,” she notes.
Barriers To Diagnosis And Proper Treatment
Awareness, acceptance of diagnosis and receiving proper care at the right time can help ensure proper treatment of children with autism spectrum disorder.
“Awareness, even among physicians, was very less 20 years ago. Also, there were several nomenclatures for the various conditions. This has changed over time. Also, there is no objective blood test or scan to determine whether a child is autistic. A specialist has to just observe the child and put two and two together,” said Dr Chugh.
That parents refuse to believe diagnoses also leads 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 into the mainstream education system can be a challenge.
“Special educators are needed and various resources are required to train the children in areas they face difficulty. However, there is a dearth of it in India,” said Dr Mukta Vasal, chief child and adolescent psychologist and co-founder of ‘Mom’s Belief’.
Mom’s Belief, through calls and video chats, help parents help their children.
“Usually, therapy for autistic children is one on one. But, we have way too many autistic children and very few therapists. Also, there are many who would not have access to the therapist. Here, it can be done virtually and we have found results are just as good. Involving parents is the best way to ensure that whatever is taught in the therapy is practiced in day to day life,” said Dr Vasal.
What should you look out for?
· 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
· Do not speak at least one word by 16 months and two words by 24 months
· Lose the vocabulary they had
· Do not pretend-play with dolls, cars or other toys
· Have difficulty in sharing toys
· Become fixated with specific objects like a certain toy or clothing or even things like the way sun rays come in
through the window
· They might also have tactile obsessions – they might constantly run soft or smooth items across their check, lips or hands
· Their actions are repetitive – they might rock back and forth or watch the same movie over and over again
· Sleeping problems like difficulty in falling asleep, waking up during night, erratic sleep pattern, sleep disturbance and excessive daytime sleep
· Children may become more moody, arrogant and non-communicative
· Attention span may decrease
· There may be 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
· Problems with sexuality – touching private parts and masturbating in public, removing clothes in public, making
obscene gestures, discussing inappropriate sexual subjects
How is it diagnosed?
· There is no objective tests like blood test or brain scans to diagnose autism
· The diagnosis is based on the answers given by the parents, child’s behaviour and observations made by trained psychologist.
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