At a time children of his age were toddling and babbling chatterboxes, the three-year-old boy went into a cocoon.
The little one refused hugs, hated being held, avoided eye contact even with his doting parents, and did not respond to calls.
Kavya was worried to see her son confined to a world of his own — a world she didn’t know. “I knew something wasn’t right, but I couldn’t figure it out,” she later said.
The young woman was not the only confused mother. Autism in children has left many a mother confused and worried.
According to the Indian Journal of Psychiatry, approximately one in every 160 children in India are autistic, with the disorder affecting boys four times more than girls.
Early identification and intervention could make a significant difference in a child’s development, but many families face challenges in accessing timely care and services.
What is autism?
Autism — or Autism Spectrum Disorder (ASD) — is a neurodevelopmental disorder that affects an individual’s social interaction, communication, and behavior. Though difficult to identify in young children, early diagnosis is critical for timely intervention and better results.
Early signs of autism include delayed or absent language skills, difficulty in social interaction, repetitive behaviour, and sensory sensitivities.
Non-autistic children, too, could display similar symptoms. A professional evaluation is necessary if a child exhibits such behaviour.
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The big challenge: Diagnosis
For parents of children with autism, one of the biggest challenges is to identify the condition. Diagnosing ASD could be difficult because there is no medical test to detect the disorder.
It is usually the child’s development history and behaviour that help doctors diagnose the problem.
ASD, at times, could be detected as early as 18 months. By age 2, a diagnosis by an experienced professional could be considered reliable.
However, many children are not diagnosed until much older. In some cases, it is diagnosed after the child becomes an adolescent or adult.
The delay denies them the much-needed care. And it also fails both the child and the parents.
“The entire system failed me and my daughter. My daughter’s condition was not diagnosed until she was six,” Sangeetha Patil of Hubballi in Karnataka told South First.
“Unfortunately, when told that she is not speaking unlike her elder sister who started to speak at the age of three, her paediatrician asked us to be patient. It was only when the child was in UKG, her teachers recommended screening for autism. The teachers’ suspicion was true,” the mother added.
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Parents, too, at fault
But, the problem is not with the paediatrician alone, explained Chennai-based Consultant Special Educator Girijha R Shashank.
“Many parents fail to tell the doctors about other issues like the child not maintaining eye contact, not responding to calls, etc. They focus only on speech issues,” Shashank, who has more than two decades of experience in helping children with autism, told South First.
Vani Rajendra, the mother of a 32-year-old daughter with autism, said parents should notice smaller details too, like, their six-month-old child not responding to his/her name, being uninterested in playing with other children or toys, loving only to stack objects (blocks) one above the other, delayed speech, etc.
“A mother can tell that there is something different in her child,” she pointed out.
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The bigger challenge: Acceptance
Accepting that their child is autistic could be a daunting, emotional process for parents. It is natural for parents to pin hopes and dreams on their children, and a diagnosis of autism could shatter them.
It is common for parents to go through a grieving process that may include denial, anger, bargaining, depression, and a refusal to accept the condition.
“It is important for parents to realise that their child’s autism does not define them as a person, nor does it mean that their child cannot lead a fulfilling life,” Rajendra explained
“With support and resources, parents can learn to embrace their child’s unique strengths and challenges, and work towards helping their child reach their full potential,” she told South First.
She said it is also important for parents to seek a supportive community of professionals and other parents who can offer guidance and empathy.
While agreeing with Rajendra, Director and Clinical Head of Therapy services at SYNAPSE Therapy and Learning Center in Chennai Mohamed Zaheer said living in denial makes things worse.
Accept the challenge
“Parenting a child with autism presents unique challenges that can be incredibly difficult to overcome. Several parents often face stigma and are misunderstood by society. But it is essential to accept the diagnosis,” he said.
Several parents seek professional assistance only after spending several years in denial, making it difficult for the practitioners to intervene.
“Earlier acceptance is easy for the child. As they grow older, the more the child will be adamant and will have other behavioral issues,” he told South First.
Meanwhile, Shashank said many parents go clinic-hopping, which is a bad idea.
“For a child with autism, it takes at least six months to get used to the therapist or a special educator. But as the child gets used to the person and the place, parents tend to shift the child to another clinic, which could be a problem,” she explained.
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The biggest challenge: Onus on parents
Rajendra underlined the importance of sticking to a routine while dealing with children with autism. Irrespective of how good a therapist or a special educator is, the parents should stick to a specific routine at home.
“It is literally like the onus is completely on parents. Therapy can be for about an hour or so but home is where the child’s development happens. The onus is on parents/caregivers,” she explained.
Narrating her experience, Rajendra said she and her husband would make plans — daily, short-term, weekly, monthly, half-yearly, and yearly — for Preksha, their daughter.
“Diagnosis in India is faster than in the US. We lost four years and it was an Indian doctor who diagnosed Preksha to be high on the spectrum. Her attention span was less than five minutes. Today, Preksha is an entrepreneur and owns a design cafe,” the proud mother said.
However, she hastened to add that India lacks awareness and understanding of autism, and many families are isolated and marginalised.
There is a misconception that autism is a result of bad parenting or a lack of discipline, which can lead to blaming and shaming the parents.
“Once a child is diagnosed with autism, parents must navigate a complex landscape of treatment options. There is no cure for autism, but early intervention can help children develop communication, social, and behavioral skills,” she added.
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Treatment options
Treatment for autism includes behavioral therapies, speech therapy, occupational therapy, and medication.
However, access to these therapies can be a challenge, particularly in India where there is a lack of trained professionals and specialised services.
Many families are forced to travel long distances to access care or pay for expensive treatments.
Despite these challenges, parents of children with autism are some of the most resilient and dedicated advocates of their children. They work tirelessly to ensure that their children receive the support and care they need, and are constantly searching for new ways to help their children thrive.
“As a society, we must do better to support families of children with autism. This includes increasing awareness and understanding of the condition, improving access to care and services, and reducing stigma and discrimination. By working together, we can help children with autism and their families live full and meaningful lives,” Rajendra said.
Zaheer added that diet, too, plays a major role. Dairy products, refined wheat flour (maida), white sugar, and junk food, and spending much time before television or mobile phones should be avoided.
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The state has a role too
Parents and therapists demanded that state governments should look at rural areas as well.
Zaheer and Rajendra opined that governments should play a crucial role in ensuring that rural children with autism have access to early diagnosis and treatment.
“To begin with, they can establish programmes and initiatives that increase awareness about autism, including its symptoms, among parents, caregivers, and healthcare providers in rural areas,” Rajendra said.
She suggested that the governments could invest in training and hiring more healthcare professionals, such as psychologists, speech therapists, and occupational therapists, who can ensure early diagnosis and treatment in rural areas.
Rajendra further recommended the government consider training parents of children with autism, or elderly parents, who have their children settled elsewhere for their special education needs so that they could dedicate some time to helping children in rural areas.
Experts and parents also suggested rolling out mobile clinics or telehealth services to reach out to remote and underserved areas.
Such services could provide timely and cost-effective assessments and interventions, thereby reducing the burden on families who may otherwise need to travel long distances to access these facilities.
For some families, the cost of treatment could be a burden. “We’ve spent a lot of money on therapies and treatments over the years,” Ritu, a parent from Mysuru, shared.
“It’s not easy, but we do whatever we could to help our son,” she said.
Despite challenges, Ritu is hopeful about her son’s future. “He has come a long way since he was diagnosed with autism,” she said. “He’s making progress every day, and I’m proud of him.”
For many parents of children with autism, the journey is a ride peppered with both joy and struggles. It can be isolating and exhausting, and also fulfilling with moments of growth and discovery.
As one parent puts it, “It’s a rollercoaster ride, but it’s worth it.”
