“A spectrum of possibilities”
That is the motto of the Sambhavam Center for Autism, in BTM Layout, founded by Chitra and Venu in 2015. As parents of an autistic child, they learned ABA (Applied behaviour analysis) therapy to work with their son when he was diagnosed with autism in 2009. Today, they and their team of therapists work with about 30 neurodiverse children with Autism, ADHD and other developmental delays. Parents are encouraged to be active participants in the process. In fact, the entire center has a “joint-family” feel about the place!
I requested Chitra and Venu for an opportunity to observe and write about the therapy process (if I would not be intruding) because I believe it is important that:
a) parents know about different small-scale options that exist in Bangalore,
b) all of us are aware of the unique abilities and constraints of a child with autism.
Awareness is only the first step towards building empathy.
Orientation
When parents first come to Sambhavam with a child who has some developmental delay, an ABLLS (Assessment of Basic Language and Learning Skills) assessment is done — by talking to the parents, and observing and working with the child. The process takes 5–6 hours and results in a baseline of 26 parameters, each with their individual scores. Based on this, an Individualized Education Program (IEP) is crafted for the child, and the therapist will periodically update the new scores as the journey progresses.
Chitra told me that over the past two years she has seen more and more parents realize that early intervention is important, and so they reach out for help sooner. She feels that increased levels of awareness about autism over the years have made it easier for the paediatricians and developmental psychologists to recommend intervention earlier, instead of postponing the diagnosis and wasting time.
ABA therapy uses the technique of positive reinforcement, where a child is rewarded for good work and behaviour with praise, edibles that he likes, or a break/activity of his choice. Consistency and repetition of this process helps the child take cues from the environment on how to behave and what to expect.
Many people with autism require routine and structure in their lives, and every child has a detailed time-table that is pasted on the wall beside his table. That is for the benefit of the therapist. For the benefit of the child, a pictorial equivalent is created by placing picture cards depicting “Work time”, “Wash hands”, “Snack time”, etc in a slotted wall-hanging. Only three cards are displayed at any time, and the therapist moves them around as each activity is completed. Parents are encouraged to do the same at home.
Table-top activities
I spent an hour and a half observing a three-year-old boy “A” whose mother was also present during therapy.
They started with table-top work at 10 am. The therapist placed a few picture cards on the table and asked him: “Show me swing”, “Show me bus”, etc, praising him when he pointed correctly. Then she placed another set of picture cards, and asked him to “sort” the new ones that she handed to him, into the correct category. Then, “Show me dog”, “Show me cat”, and so on.
Now it was time for the reinforcement. She asked him, “What do you want?” and placed pictures of four toys in front of him. He chose Mr. Bean. She said, “You want Mr. Bean”, and gave him a Mr. Bean toy that he played with for a bit.
Then, it was back to the activities, identifying parts of his body. “Show me neck”. He got that right. “Show me stomach”. He pointed to his neck again; the therapist corrected him, and gave him a high-five when he got it right. “Show me head”. He got that right. Then a little break for a rhyme and some tickling, which he enjoyed very much! It was clear that the two of them had bonded very well. His mother and the therapist also kept exchanging notes on how he did the activity at home and at the center.
Back again to work. “Show me driving”, “Show me writing”, “Show me standing” on picture cards. By now, A is restless. He starts flapping his hands, and fidgets on the chair. So she gets him to stand up and continue with the activity. “Show me bending”, and he bends his body. “Bring me toy” and he brings the toy that she has placed on the floor. “Bring me book” and he brings over the book. Then, back to the table top, where he matches picture cards — ‘shirt’ with ‘pant’, ‘bed’ with ‘pillow’, ‘comb’ with ‘hair’.
Now, it is time for the next reinforcement. She gives him a choice of four picture cards, and asks him, “What do you want?” She does this several times, shuffling them around so that he has to scan and choose what he wants. Each time he selects “wafers”. She gives him some wafers to eat one by one. Then he looks around for something. She asks “What do you want?” He says “wa” and she asks, “Do you want water?” She bring his water bottle from his bag and gives him little sips. She wipes his mouth and hands with a tissue.
A child with autism has certain behaviours called ‘stimming’ (stimulating). They have certain sensory needs that they will try to satisfy by biting their lips or flapping their hands, or rocking and spinning themselves. To give cues that they should not do this during work, the therapist says “Good hands”, or “Good mouth” as a gentle reminder. They are given time during breaks to satisfy their sensory impulses.
For example, about 40 minutes into the therapy, A started squeezing his hands. The therapist brought out a fluffy rug that she placed on the floor. He lay down on his stomach, and she brought a big, light, plastic ball and gently rolled it back and forth over his body, creating a massage that calmed him down. Before ending this, she said, “on count of 10, massage is over” and counted to 10. The idea is to always give the child a heads-up when transitioning from one activity to another.
At the end of an hour, the therapist put the table-top picture card into the pouch of the schedule and said “over”.
Speech therapy
Sambhavam has speech therapists and occupational therapists who come to their premises so that these therapies are also available under the same roof. For the next 30 minutes, A worked with a speech therapist.
First, the therapist brings out a tablet with the speech app and uses A’s finger to select objects while she sounds out the words. “Sheep says baa”, “Cow says moo”, and so on. He tries to make some of the sounds and she praises him.
Next, she teaches him to move his tongue to one side and then the next, using an oral motor tool (with some jam on it) to help him sense the placement. He doesn’t like this activity and gets fretful. She stops, picks him up, hugs him and sings to him softly until he calms down. When he is calmer, he orients his body towards the table again and they resume work, this time opening his scrapbook and trying to vocalize sounds associated with the pictures.
At various times during the therapy, she offers him a choice of four edibles on picture cards, and he chooses what he wants (usually chips).
Break
At 11:30 am, all the children take a snack break. They sit around together with therapists, munch on their snacks and also play with some of the sensorial toys and material. One child was running her hands through a tub filled with dried beans, another was playing with a puffer ball. Others were playing on a trampoline or the swing.
Older children
After the break, Chitra took me down to where the older children work. She told me little bits about each child’s journey and progress. A 12-year-old boy with ADHD who is being home-schooled also comes here. They have worked with him to create a structured time-table that he is comfortable with.
For girls approaching puberty, they coach the mother on how to prepare the child for the onset of periods, by showing her a clean pad and a soiled pad and how to wear one. The child trains for some time by wearing a pad to school a couple of days a month, even before the onset of periods. One girl has recently made that transition successfully.
The older children sit two-at-a-table and work at their individual assignments, with a therapist guiding them. The same pattern of praise and reinforcements is used. For older children, the therapist asks in advance what the child would like? A girl said “Two M&Ms”, and the therapist placed them on the table before giving her the Math problems that she was to work on. She works diligently on her worksheet and gets a compliment at the end. Praise is always specific: for example, “good job listening” or “well done asking for help”.
One mother and daughter have come from another town to spend a few days here and be coached on specific areas that the mother needs help with. The daughter is home-schooled by her.
Desensitizing
A child with autism can crave certain sensations while other sensations may bother them immensely. One 10-year-old girl has been terrified of the sound of balloons popping and cannot attend birthday parties. So the therapists are working on desensitizing her gradually. They began by placing an inflated balloon in the same room, until she got used to its presence. Now, she has started to play with it. The next step will be to pop it after warning her that they are going to do so. And finally, they will pop it without warning. The gradual process aims to get her used to something that frightens her today, and stops her from attending birthday parties, which she otherwise wants to.
Building social and communication skills
This is an uphill task for a child with autism. To gradually build this, the therapists try to create a few shared activities, especially with children who seem to have bonded with each other. I watched two five-year-olds (a boy and a girl) play a board game together, aided by their therapists.
It was a match-the-balloon game. Each child had a board with pictures of balloons held by people/animals. Each child took a turn to roll a die that had coloured sides. Based on the colour that came up, the child would pick a circle of that colour and place it on the balloon. Whoever finished matching all balloons first won the game.
Each of them was quite good at identifying the colour and matching the balloon. But the therapists had to remind them to pass the die to the other child after the turn was over. The little girl had figured out the logic of the game by now, and instead of leaving it to chance, she was carefully placing the die with the desired colour facing upward! She had to be reminded to throw the die instead!
Chitra told me that this girl used to display aggressive and even self-injurious behaviour when she first came to them. She was non-verbal, but they soon realized that she knew alphabets. She would collect a pile of them and hoard them. Then, she started spelling out words. They had to work with her on comprehension, and today she can spell out simple sentences. Once the ability to communicate was established, much of her aggression subsided.
Another child uses the Avaz app on the iPad to communicate. He has a repertoire of words and objects on it. When the therapist asked him what he wanted to do during his break, he quickly browsed through them and pulled up “sand pit”. They went out to play there.
For children who cannot yet read, the picture cards are invaluable. The 3-year-old I had observed in the morning was being taught to pick up the “toilet” picture card and give it to his mother to indicate that he wants to go there.
Being able to communicate, being able to indicate one’s desires, being able to select from meaningful choices and thereby gain a measure of control over one’s world — these are the tools that empower a child with autism. A lot of the anxiety and aggression subsides once this has been established, and the personality within begins to sparkle.
Consistency and respect
Chitra and I spent a couple of hours talking that afternoon. She told me about her personal journey with her son and what she has observed over the last few years at Sambhavam. The children who make the most progress are those whose parents are able to replicate the same environment at home. All children need consistency, but those with autism need it even more. So if a parent creates the same kind of visual work schedule at home, uses the same cues as reminders, spends time engaging the child, then there is real progress.
At the heart of everything is respect. Always using positive cues to guide the child, not holding a child’s face to direct his gaze (cup your hands above his eyes instead), using a tone of respect to speak to the child…all of these add up and the difference is visible in the child’s development.
The beginning
Today, Chitra and Venu are helping other families cope with autism. But when their own journey began in 2009, it was a rocky start. Chitra tells me how her son Srikar would roll on the floor, crying, for hours at a stretch. How he exhibited every possible ‘behaviour’ in the textbook. How she was in despair wondering how she would move this mountain. In this article she describes how they went about systematically reconstructing their lives, how she got trained in ABA, how the two of them took turns to work with Srikar, their decision to home-school him and how they co-opted other people in their circle to help.
Their articles on homeschooling Srikar are a delight to read: Venu teaching him decimal numbers using the Socratic method, or problem-solving through puzzles, or Chitra trying (and failing) to coach him on how to talk to girls! Best of all, are Srikar’s own articles: a story, a poem or his notes on a science experiment. They are infused with positivity and humour. Reading them will help you understand why their center is called Sambhavam.
