As the colourful crowd gathered for the Rainbow Pride March this year at the Rajarathinam stadium in Chennai and shouted, “I am gay, that’s OK!”, Chinmay walked along joyfully as an ally. With his hands flapping up and down and his eyes gleaming with euphoria, he covered his ears every time the drums played close to him, but shouted “That’s OK!” along with the rest of the crowd.
It isn’t hard for a person with experience in developmental psychology to spot that Chinmay has Autism Spectrum Disorder (ASD). He was accompanied by his father, Ramanathan, who has been bringing him along to pride marches for the last two years.
“I bring Chinmay to the pride marches because I feel like he is more naturally accepted there,” Ram says candidly. “Acceptance is a similar construct everywhere, whether it’s my son being a special child or what the LGBTQI+ community is fighting for. I believe if he is learning, even though it’s delayed, he should also be more accepting of other people. And he is,” Ram says.
But caregivers like Ramanathan, who want their children to have a full life despite disabilities or mental illnesses, are rare.
Chinmay at the Chennai Rainbow Pride 2017. Image: Ramanathan
Autism and mental health
India has the highest rate of suicide occurring in the age group of 15 to 19 years, with south India having higher risks than other regions. With a rise in number of adolescents with depression in south India, denial is a frequently-used defense mechanism among caregivers.
With neurodevelopmental disorders like autism, there is an ongoing debate about what domain they should lie in. Being a condition that stays lifelong, autism is perceived as a disability by some and as a developmental disorder by others, but research shows that ASD is closely linked to mental illness, and is majorly accompanied by psychiatric disorders such as schizophrenia, bipolar disorder and even depression.
A significant part of therapy and caregiving for children with autism is to do with mental health, which is why it is important for parents and caregivers to be sensitive, open-minded and well-informed about the needs of the children – whether they suffer from depression, schizophrenia or autism.
Identifying autism and mental health issues
A few weeks after the Pride March, I went to meet Ram at his home - an old house in Alwarpet with a tiny open space that leads into the living room, with three beautiful dogs welcoming visitors.
“I used to work in Hyderabad as a chartered accountant and lived there with my family. Chinmay was 3 at that time. We sent him to a playschool, which is where his symptoms for Autism spectrum first came to notice,” Ram recounts.
“We did notice a few signs at home. For one, Chinmay was very hyperactive and never slept properly at night,” says Ram. “He also never made eye contact with his mother, but like most parents, we just took it as a toddler being a toddler. It was when he started playschool that we were notified by the teachers about what was really going on. We were referred to a psychologist who did the assessment and made the diagnosis. As he grew up, the symptoms became clearer,” he adds.
It is imperative that developmental disorders be diagnosed in early childhood, which is between 2 and 4 years. An early diagnosis facilitates early intervention, and that helps children gain basic skills required to enhance the quality of their lives.
Chinmay with his father Ramanathan
Research has shown an increased sense of positivity and reduced distress among caregivers who have had their child assessed in this age, as it gave them enough time to cope with the knowledge. In India, early diagnosis is extremely low, since caregivers are often not well-informed or fed with a lot of misinformation, sometimes even by health professionals.
Smruthi Nair, a practicing psychologist in Chennai, says that she has encountered several parents who have imposed their lack of understanding on the children, only to their detriment.
“I worked with a 10-year-old girl with autism and Intellectual disability (ID) whose parents do not want male therapists to work with her in occupational therapy (OT), as well as in behavioural therapy. Later, they started having problems even with having male children around, and wanted to consider herbal medication. Where do you even begin with such parents?” Smruthi asks, pointing out to how uninformed decisions born out of genuine fears can be harmful to the child.
Adolescence and positive caregiving
When a child with autism enters adolescence, new challenges emerge for both the child and the caregiver. For neurotypical children (not affected with any developmental disorder or ASD), teenage is a vulnerable time as the hormonal changes bring along characteristics such as anxiety, aggression and emotional outbursts.
Exploring sexuality is a significant component of adolescence. While it poses a few challenges for neurotypical people, for people with developmental delays, it’s a bigger problem. The societal taboo makes it all the more complicated.
What separates them from children with disorders like ASD or schizophrenia is the absence of self-control, and positive caregiving can help children with ASD deal with adolescence better.
Chinmay at Pride March. Image: Ramanathan
Positive and negative caregiving exists in varying proportions, and in India the gap is larger than it seems because of stigmas that add to the one surrounding mental health. For instance, sexuality is considered taboo among adolescents already, and it worsens when the child has a mental illness or a disability.
But Chinmay’s parents considered his needs as a teenage boy and attempted to work with them.
“We understood that we need to give him his space where he can express himself. Masturbation at this age is natural. What we try to teach him is that he should know the time and place for doing it. Yes, it is stressful for parents, but acceptance is the key. Some day he might want to have a girlfriend too, which worries me because as a country we haven’t progressed enough to go that far,” Ram points out.
“The school is also very conscious and helpful in these things. For example, they teach him ‘good touch-bad touch’ in order to educate him about respecting borders of other people, as well as recognizing his own,” Ram explains.
Ramanathan at his home in Chennai.
Social stories is a technique used to reinforce such behaviours that you want your child to express or not express, based on where he is and who he is with. It’s about recognising whether doing something will make the other person happy or sad. Often used with children with ASD, it has proven to be very effective in time.
Authority, morality and secrecy
Smruthi Nair says that even in the case of kids born neurotypical, extreme expectations from parents later become the root of violence.
“I had a case where a 16-year-old boy who underwent physical abuse from his mother over absurd impositions like not scoring the highest in school, developed psychosis which entwined with his characteristics as an adolescent. This was to a level where he would masturbate anywhere in the house, without knowing who is around, and also exposed himself in public once. Authoritative parenting, with no support either from the family or peers, is what I believe became the cause of his dissociation with reality. This is child abuse at its worst,” she says.
Smruthi attending a parent in her clinic.
Caregivers in state of Tamil Nadu are also known to fall for quackery like ‘Siddha medicine’. “There was another girl, a preteen with severe autism, whose family couldn’t bear the slow progress she was making and secretly performed an exorcism on her, which she revealed it to me because of her repetitive behaviour,” Smruthi narrates.
“For the parent with an impaired child, the societal pressure often becomes unbearable. That still does not give them the right to enhance the sickness. One of the girls I treat has autism that is accompanied by major sensory issues, and is still forced to wear hijab when she clearly does not want to,” Smruti adds.
Blaming the child and the condition for the deterioration of their own relationship is one of the biggest challenges caregivers face. “I do understand the situation. There are times when I sympathize with the parents, especially the mother, because in our society mothers are to be primarily blamed for “bringing a problematic child” to the family,” Smruthi says.
A cross-sectional survey that randomly interviewed close to 160 Indian caregivers determined a serious prevalence of basic unawareness related to mental illness. About 62% of the caregivers agreed that the person is largely to blame for his/her mental illness.
Ram confirms this when he talks about the hazards in his peer groups. “Of course, relationship between the parents suffers a great deal when the child turns out to suffer from any illness. A lot of families we know have fallen apart, sometimes one of the parents have left for good. Acceptance is hard but not impossible,” he adds.
Smruthi says that it would help if parents don’t think that they ‘own’ the child. “You are straightaway violating human rights when you’re not being sensitive towards your child who has depression or mood disorders, but how will the parents learn this if they seem to claim an ownership of the child?” she asks.
But is the Indian family system ready to accommodate it? “They have to,” Smruthi argues. “Here, being a sensitive parent is seen as being a ‘weak’ parent by other people, completely ignoring the fact that it is the right and scientific thing to do.”
Maintaining confidentiality about the child with the parents is also important, and based on the wisdom of the therapist, especially when treating adolescents and teenagers with depression and suicide ideation.
On the one hand, it’s completely unethical for a therapist to share an adult client’s information with their parents behind their back (which happens a lot in India), and on the other hand, active involvement of a parent in a preteen‘s (below 14 years) case is significant. So, what does one do when it’s an adolescent whose consciousness, episodes and anxiety levels depend on factors like the environment and the people around them?
“You need to be able to identify risk,” Smruthi says. “The decision I make has to be supportive of the person’s mental health as well as their physical health. If I notice that the child is on the verge of self-harm or is going to engage in impulsive behaviour, it’s my duty to inform the parent and make them aware. But if there is something the child does not want the parent to know, and it's free of such risks, it’s in his/her favour that you respect that,” she adds.
“With depression and anxiety disorders, both the parents need to work as one unit, give the children their space, and as a therapist it’s my duty to counsel the parents in a way that it’s empathetic to them. Establishing a rapport, and making them understand that while this is not the kind of world they grew up in, the situation requires them to behave in such a way without being judgmental of the child’s acts and choices, is important,” Smruthi says.
However, it is not easy to be a good caregiver, Smruthi says.
The challenges of a caregiver
Caregivers’ challenges have been well documented in research that strongly correlates the stress and burden of parents with their children getting diagnosed with developmental disorders. Developing countries endure a more intense version of this stress, depending on specific psychosocial factors, like low income of the family.
Caregivers who look after persons with mental illnesses or neurodevelopmental disorders are increasingly realising that they must work towards providing the person with a meaningful life, and not just helping them cope with their health.
Chinmay goes to a ‘special school’ in Chennai that practices the Waldorf curriculum system and works with an artistic approach to vocational and behavioural training.
“We noticed that he had a thing for music and he liked playing drums, so we are sending him to learn that as well. I take him to weekend rock concerts, because we both like rock music and we found a drummer there who agreed to teach him. He also likes to paint. So, there are many things we are exploring together,” Ram explains.
Chinmay practicing drums and painting- Courtesy: Ramanathan
“I realised there is a major lack of acceptance in the academic system for children with special needs. For example, when he was studying in an academic school with neurotypical children (children who are intellectually, cognitively, and developmentally typical) they were once supposed to go on an excursion and the teachers refused to take Chinmay along as they were worried that he would make trouble for them. This got me very angry,” Ram recounts.
“Then there is the whole thing about exams,” he adds. “That’s why we decided to take this approach to his education, and yes, for him, it is working well,” he says.
“For all I know, one should not judge a parent for certain misconceptions and decisions they take under pressure. Their deprivation is very understandable and personal. But there is no room for sympathising with the ones who willingly choose to be on the ignorant side,” explained Ram when I asked him for a final statement on what he thinks of the current state of caregiving in India.
What does it mean to be a good caregiver? Are you a good caregiver if you adhere to the ‘demands’ of the society that doesn’t fall under the interests of your child? Or are you a good caregiver when you attempt to think beyond social constructs and provide them the space and freedom to express themselves? Science supports the latter.
“I am worried about setting boundaries,” says Ram as we walk out of the living room towards the entrance. “Now that he is a big boy, it concerns me what other people are going to think of him when he is in public. What if he looks at women even though he does not mean to stare intentionally? How are they going to understand that? But I also think it has a lot to do with the public’s responsibility and its comprehension of what being someone with an illness or disability is like. What they usually show is pity and not acceptance. We are working on it, I hope others do too.”