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Autistic children and their immediate families lead a troubled life, something most others have no clue about. A small group of people is using music to help such children adjust better with the world and lead a happier life.
(This piece of mine appeared in the Financial Chronicle last Friday. I am reproducing it here because it is a serious issue that needs far more attention than it is getting today. Also, it is time we examined and corrected our societal biases w.r.t autistic people.)
Right from the time he was just a year and a half old, Suraj (name changed) could identify tunes and recognise songs that belonged to the same raga. If the music was out of tune, he would pick it up immediately and make sounds to indicate that he was displeased. His parents were surprised at this uncanny gift their child had been born with and took much delight in it.
It was only when he turned three that they realised that this exceptional flair for music was probably nature’s way of compensating for a lack of certain other abilities in the child. For, they realised that he was autistic. To battle the condition, they started taking Suraj to a speech therapist and a behavioural specialist. While they did notice some improvement in his condition, it was not until he started going to Sampoorna regularly that he showed marked signs of improvement.
Sampoorna (the word means ‘complete’ or ‘whole’ in Sanskrit) is a place that provides therapy for autistic children through the use of music. Run by a small group of extremely dedicated people, it has been using different forms of music to bring joy to autistic children and help them deal with the condition better.
Autism is a neuro-psychological condition mainly characterised by a difficulty in communicating and forming relationships with others, shortened attention spans, highly repetitive behaviour and a reduced ability to understand complex or abstract concepts. Many of these children are non-verbal too, which complicates matters further. What is commonly referred to as autism is actually known as Autism Spectrum Disorder (ASD) in medical parlance and includes a range of related disorders such as PDDNOS, Asperger Syndrome and Rett Syndrome.
Autistic children lead a troubled life, finding it difficult to adjust to the world around them. In many ways, they reside in a different world which has its own thoughts, sounds and rhythms.
At Sampoorna, the attempt is to use music to alleviate the turbulence in the minds of autistic children and help overcome their deficiencies. Kavitha Krishnamoorthy and her husband Ganesh Anantharaman set up Sampoorna in January 2013. The centre was born out of their experience of bringing up their child who is autistic. They hail from a family steeped in music. Ganesh’s cousin is Bombay Jayashri, a famous carnatic music singer. Ganesh is a trained Carnatic classical singer too.
“Since we come from a musical family, we often used to discuss music. We also started talking about using it to bring relief to autistic children. We knew music had a healing power. We wanted to see if it worked on children with such disabilities too. Frankly, Sampoorna started out as an experiment, but has panned out very well.’ says Ganesh.
Sampoorna runs music therapy sessions every weekday in the morning and evening. Refreshingly, the sessions are not formal at all. The therapist interacts with the child much as a close aunt would: with the right mix of affection and firmness.
With two therapists on board, the centre uses a combination of Indian classical and western classical music in its sessions. The music is structured, but not rigid. Says Kavitha: “We follow a goal-based approach which broadly has five stages: building connectedness, improving communication, breaking repeating patterns or stereotypical behaviour (and re-channel that energy to something more appropriate), developing social skills and finally, developing musicality. While the first four sessions are meant to acclimatise the child with music and get her to develop a deep bond with it, they start proper music training (in vocal or keyboard) at the fifth stage.”
A structured, yet fluid approach is what Hitham Trust follows too. Hitham Trust was set up by Bombay Jayashri, who was keen to use the benign effects of music for the benefit of autistic children. Jayashri puts in beautifully when she says “We do not insist that the child learn a particular song. We try to get into their space and share the music with them.”
At its music centre in Chennai, Abinaya puts children through their paces using a combination of bhajans and carnatic music. She has been a music therapist for five years. Since each child has a different musical inclination, she says that the main idea is to identify what kind of music works best for each child and then stay with it for a period of time. Every now and then, she tries to introduce a different kind of music to the child. “Our objective is to connect with the child. They usually have an attention deficit, but music holds their attention and helps them calm down.” says Abinaya.
The use of music as a form of therapy has found eager takers. For instance, Sampoorna and Hitham regularly receive applications from people who want to enroll their children there. And with good reason too, because the therapy really seems to be working.
Priya has been sending her daughter Ambica (name changed) to Sampoorna since its founding days. From early on, she noticed a positive change in the child. ‘Music calmed her and made her more confident (which I could make out from her interactions with others at school). She started identifying different tunes and her response time started shrinking. After a point, she even started singing along with her therapist.’
By and large, most therapy centres in India tend to focus on ‘reforming’ children with disabilities and try to make them ‘fit’ into societal norms and expectations of behaviour. They usually do not take into account the child’s own comfort with the therapy or his/her inner flair for something. The music therapy imparted by Sampoorna and Hitham makes a refreshing departure from this approach.
Ganesh Anantharaman says that one of their focus areas is to make the child feel the joy of the music, thereby getting a sense of inner liberation. What’s more important is that every child’s individuality is respected and no attempt made to force a certain kind of behaviour upon him or her. This nuanced handling of children probably comes from the fact that Ganesh and Kavitha have themselves raised an autistic child at home.
The work being done by Hitham and Sampoorna has to be seen in the right perspective. The incidence of autism is believed to be quite high in India, though there is hardly any reliable quantitative estimate of this. According to Nishath Kirmani, President, Autism Society of India, some reports estimate the incidence of autism in India to be one in hundred. She, however, believes that the actual figure is considerably higher, because many cases go undetected or unreported. For one, many parents remain surprisingly unaware that their child is autistic until the condition reaches an advanced stage. In many other cases, they do not reveal their child’s disability fearing ridicule and exclusion by neighbours, friends and others.
Says Nishath: “Many parents live in denial initially and, therefore, ignore the problem. This leads to a delay in diagnosis and intervention, causing further problems later on. The sooner the intervention, the better for everybody concerned.”
She endorses the use of music to alleviate autism. “It caters to the sensory needs of the child, improves focus and attention and calms the child. It channels their destructive energy into something positive. This helps them communicate better and socialise more.”
Other forms of therapy for autism include speech therapy, behavioural therapy, occupational therapy, applied behavior analysis and sensory integration therapy. Music is a promising addition to this list.
This improvement however, is not instant. Parents and therapists have to be patient. Ganesh says he has met a few parents who have unreasonable expectations from the therapy and get upset if they do not see an improvement in the child immediately.
Challenges remain. High quality therapy is hard to find in India, because of the limited number of good therapists. For parents of autistic children, this means that good therapy comes at a high cost. For the therapy centres, the biggest challenge is finding good therapists — those who have a grounding in music, are flexible enough to experiment with different approaches and are patient. Scaling up is another challenge. Due to the intense and personal nature of interaction between therapist and child, the difficulty in finding good therapists and the need for a flexible approach, it is very difficult to template a therapy model and scale it up. Rapid and large scaling up could come at the cost of the integrity of the therapy, and this is something neither Hitham nor Sampoorna want.
Meanwhile, at Sampoorna’s therapy centre in Bangalore, a boy is clapping his hands, zig-zagging around the room, tapping the walls repeatedly and making a sound that’s somewhere between a meow and a howl. Every now and then, he emits a high-pitched laugh. Janani’s melodious voice cuts in softly as she slowly sings “Hello Shreyas, hello Shreyas, welcome to Sampoorna. It’s fun time, its music time. Let’s make music together.”
And slowly, a beatific smile settles on the boy’s face and his movements subside. He sits down cross-legged on the floor. Janani sits down across from him. And the session begins.