For a long time in India, parents of kids with ADHD despaired, having no name for what troubled their child. In 2006, when Neha* noticed her son struggling, she wasn’t sure where to turn for help.

“At the time, teachers were not taught as part of their training what is LD and what is ADHD,” she said. “[My son] was labeled naughty and destructive. And was considered as someone the teachers could not handle and did not want in the class.”

Attitudes have evolved over the years, Neha noted. But according to the many parents, educators and health care professionals interviewed for this article, it is still uncommon for children with ADHD in India to get the holistic help they need.

This is, of course, not completely unexpected. With 21.9% of India’s population below the poverty line and many more struggling to afford basic medical treatment, mental health care is likely to be at best a splurge and at worst an impossible dream. But among the middle and upper class, when it comes to ADHD in children, there seems to be a desire to fly under the radar, doctors said, at the cost of proper treatment. The complexity of ADHD is in large part responsible.

ADHD in India: A complex condition

Attention Deficit Hyperactivity Disorder (ADHD) is a pattern of excessive inattentive, hyperactive or impulsive behaviour that occurs in academic, occupational, or social settings and interferes with functioning or development.

There are physiological reasons behind this. The brain of a person with ADHD is generally 5% smaller than someone without ADHD, particularly regions involved in attention, impulse control, and stimulus integration. Imbalanced levels of the neurotransmitters norepinephrine and dopamine also play a role. But the ultimate cause of the condition is unknown, though genetic factors as well as drug and alcohol consumption during pregnancy have been linked to ADHD.

ADHD generally presents in one of three different types: the predominantly inattentive type (earlier known as ADD), the predominantly hyperactive-impulsive type, and a type that combines the two.

While ADHD in India is no longer an unknown condition with an alphabet soup name, these nuances are lost on most of the frontline parties responsible for spotting red flag behaviour in children: parents and teachers.

“A lot of teachers, irrespective of how many years they’ve been working or which school they work with, don’t know exactly what to look out for,” said Tejaswi Shetty, a school counselor in Mumbai who also conducts research on mental health literacy among teachers. “Most teachers, of the ones who could identify problems, picked up only the hyperactive type of ADHD; they ignored the attention-deficit angle.”

That’s when they notice at all. Most schools, regardless of stature, are underresourced, and their staff, overextended, Shetty said. She said at one school, she and a second counselor come in for only three hours every other day and are responsible for supporting 1000 students. Giving each child time and attention, without compromising, means some may not get the extra help they may need.

Classroom teachers may face a better ratio, with 30 to 60 students, but it’s still not easy to provide close observation or support to individual students, said Anushka Vanwari, a special educator.

“In a class of 50 there is a lot to manage,” said Vanwari, who added she sometimes finds it difficult to manage her class of six at the special needs school where she teaches. “Everyone learns at a different pace but the traditional schools cannot accommodate that.”

Which leaves parents as the sole watchdogs, or, more commonly, as the actors responsible once a school has raised warning – parents, who, as non-education or non-medical professionals, often have even less appreciation for the nuances of how ADHD manifests.

“Diagnosis of ADHD requires observation of the child in free play, detailed observation from the teacher, and detailed observations from parents,” said Dr. Bhooshan Shukla, a child psychiatrist. “And the way our system works is that parents and teachers may not trust each other completely. The school counsellor might see the child being restless in the school but they may not get relevant and accurate data from parents.”

Convincing parents to consider a diagnosis and ADHD treatment is an uphill task, Shetty said.

But parents are also struggling with challenges of their own. Often at wit’s end trying to manage an unruly child, parents must navigate social and educational stigma – like Neha, who said her son would be left out of peers’ birthday parties for being ‘destructive,’ a label teachers gave him in school, too – as well as discouragement from older family members.

“They (grandparents) might tell parents, “Even you were like this when you were that age. He’s young, so it’s okay,’” said Charmagne Kinger, a special educator with 27 years of experience.

There’s a partial truth there that’s easy to grasp in desperation; most doctors refrain from making an ADHD diagnosis before age 5, because, developmentally very young children are supposed to be active and impulsive to learn. Even more tempting is the fact that ADHD is a problem that often resolves with age, with or without treatment.

But the delay of diagnosis that most children experience – Dr. Shukla said on average 1.5 years pass before most kids get the help they need – means they fall farther and farther behind. Basic concepts like maths and language are taught at a young age, said Dr. Paresh Desai, a pediatrician who sees a lot of ADHD cases, and if the child is not diagnosed early enough, the crucial developmental age is lost and he might always lag behind.

Most frustratingly for doctors – and, perhaps, all parties – is that ADHD does not necessitate an educational lag.

Pushpa Subramanian’s son was diagnosed with ADHD in 1996, when awareness of the condition was even less. Twenty years later, her son, now a man of 26, is working and living independently and pursuing his passions like any other young adult his age.

But Subramanian notes she was lucky to find the right set of experts to give her son holistic care. Experts say even when families jump all the hurdles to finally arrive at a consultation with a pediatrician or psychiatrist and receive a diagnosis, children with ADHD in India rarely get the full spectrum of help they require to thrive.

“The key issue is that one person has to act like a case manager because the child is going to require multiple interventions from different professionals,” Dr. Shukla said. “Somebody has to be the band master of this orchestra, and, by training, a developmental pediatrician or child psychiatrist might be in the best position, but we know that there are so many good GPs and pediatricians who do the job brilliantly well.”

Kinger said an ideal ADHD treatment team would consist of a parent, a special educator, a counselor or other representative from the school, a psychologist and, in severe cases, a psychiatrist as well.

But this approach is feasible only for affluent parents who have the money and time to take their children to so many specialists. It’s also only feasible when schools are able to devote additional resources to an individual child.

“They just don’t have the time,” Kinger said, though she added most teachers want to be helpful and respond supportively when she communicates the child’s needs.

For this reason, psychologist Purvi Shah said she rarely involves teachers and schools in her treatment, relying instead on behavioural therapy.

But that’s only feasible when parents are on board with such a complex treatment plan. Psychologists say they often find treating children with ADHD challenging because parents are either unwilling or unable to reinforce the behavioural therapy at home.

And while India is far from having to worry about overmedicating children in the way of the West, psychiatrists say they see some parents favour medication over other aspects of treatment in pursuit of a ‘quick fix.’

“Out of all the difficulties with ADHD, impulsiveness tends to be the most damaging because it causes interpersonal accidents. And impulsiveness responds very well to medication,” said Dr. Shukla. “But say a child has a high level of inattention, that is not going to respond very well to medication… It is easy to pop a pill but that is not the end of everything.”

Yet if anything is clear about ADHD in India, it is that each child’s case comes with individualized challenges. Just as many parents have deep reservations about giving their children allopathic psychotropic medication, these experts say.

For children with ADHD, reliant as they are on specialized support from arguably the country’s two most overburdened systems and parents often caught between the traditional and the new, it is a swirling stream to swim in, full of caring people struggling to come together in the best way. For some, like Subramanian’s son and, ultimately, Neha’s, the currents calm. But for the other 1.6% to 12.2% of children who have ADHD in India (depending which of the few and vastly disparate studies cited), the waters remain muddy.

“These are children who are not purposely being destructive or difficult. They are suffering from this disorder which makes them inattentive, hyperactive or impulsive,” said Dr. Nilesh Shah, a psychiatrist at Sion Hospital in Mumbai. “So instead of punishing the child, or shouting at him, or blaming the parents, all of us need to recognize this as an illness, and work together.”

*Name changed to protect privacy.