Parent’s Choice

Our son Srikar was diagnosed with autism in December 2009, when he was 3 years old. Luckily for us, we were able to enroll in the mother-child program at Action For Autism in January 2010. The program opened our eyes to the world of autism. We gained exposure to various manifestations of autism, along with different tools, techniques and approaches to manage it. Most importantly, having come to AFA as novices, we left the program with the belief that we will be able to help the child and help ourselves.

When we came to AFA, Srikar was diagnosed to be ‘classically’ autistic and exhibited all the textbook traits of autism. In the years since, he has made significant progress. Right now he is 7. He has been in intensive therapy all this while. We have been schooling him at home for the last 2 years. Academically he is at par with his Grade 2 peers. He goes to classes to learn music, taekwondo and drawing. He reads a lot, loves to draw and makes up stories and poems. He still doesn’t understand that everyone may not be interested in the eating habits of corn snakes and frogs but he does try and have conversations with people. He has lots of anxieties and undesirable behaviors but knows that he has to manage them. He is also learning to ask for help in this regard. He has lots of friends, though he prefers to play by himself most of the time.

When it was suggested that we write an article for Autism Network, we were given the freedom to choose our focus. After much deliberation, we thought of writing about some of the choices we made and how they helped us and Srikar. In the process of writing, we have also added thoughts about some basic skills we focused on and some approaches we use. We have tried to outline our thought processes wherever possible. While what we have written reads like a clinical, efficient approach, we hasten to assure you that it was not. We are consciously leaving out the personal trials, tribulations, blood, sweat and tears.

What approach to use

Our first call was the choice of approach. None of the available methods or approaches is “proven” to be effective and hence so much noise about what works and what does not. At the end of the mother-child program at AFA, it was down to us and our ability to figure out what is good for us and the child. There were a few factors we took into consideration while we made our call.

One, Srikar could follow simple instructions. Two, he demonstrated a certain ability to interact with us and the environment. Most importantly, both of us are so called ‘logical’ people and believe in structured approaches to anything. Thanks to AFA, we were also not looking for miracle cures that would make the child “completely normal in six months”. Most biomed approaches sounded like they had much potential for lasting physical harm. We felt it was unfair to expose the child to random chemical substances without even a basic understanding of how these are supposed to work. With all of these in mind, we chose a combination of Structured Teaching and Applied Behavioral Analysis.

Thanks largely to the exposure we got to different methods and approaches at AFA, we were able to make the choice of the approach but we still felt that we did not understand Srikar well enough. We were just starting to learn about his strengths and his difficulties. Only Chitra could manage him and that too was a lot of trial and error. Both of us were stressed out all the time. Venu could not manage him even for an hour by himself. We knew we were up for a marathon with autism and this was definitely not a great state of affairs.

Intensive focus

So, we took our second call. Venu left his job, we planned to move to South India and set out to search for a therapist. We found a very understanding therapist in Suruchi Sancheti (one of the few BCBAs in India at that time) and moved to Bangalore. One of the stated objectives for the next one year was to understand Srikar better. The other was that both of us should become familiar enough with him and the approaches to manage him to the extent that he does not differentiate between us.

We started taking Srikar to therapy classes and Chitra would sit through the classes and try understand what was happening. Initially, the idea was to understand what was happening in therapy classes so that we could provide continuity at home. Srikar was better able to manage himself as his therapy became day long and not just limited to the two hours he was with the therapist. At AFA, we had learnt the importance of consistency and we were already scheduling his entire day.

We were as consistent as possible with him. We discussed and planned our responses to his behavior and responded the same way every time. We did not let anyone, including his grandparents, our neighbors, friends, therapists or general passersby influence our responses. For quite some time, we would keep up his one-to-one table top work every day of the week, even when we were on a holiday. That level of consistency made it easy for Srikar to understand what was expected of him. It also helped us internalize what we were doing.

Training ourselves

As we saw more of the therapy and observed the practical benefits of maintaining continuity, we realized that the model of relying on a therapist will not work for long. More importantly, the therapy did not look like rocket science – we were both able to make sense of how it was working.

Thus we took the next call of not outsourcing the therapy. Chitra started training with Suruchi in ABA. Soon, she picked up enough to be able to work with Srikar at home, following a program provided by Suruchi. She would work with Srikar in the morning and go to her training classes in the afternoon. This also gave Venu ample opportunity to practice his autism management skills. Since both of us were working with Srikar, we had the entire day planned with written down schedules for both of us and daily discussions and feedback sessions on how we were doing. Again, this proved to be very useful in understanding and internalizing what we were doing. We used to do this on a daily basis initially and gradually moved to doing this once a week, once a month and now we do this once every couple of months.

During this time, Chitra also picked up the required course work for the BACB (Behavior Analyst Certification Board) exams from the University of Florida online. All this was hard work and was also immensely stressful but somehow we managed to keep our collective sanity. The thought that this was a short term effort which will equip us with the skills to deal with the child for the rest of our lives, was a powerful motivator. Another motivator was the fact that it would ease out a lot of financial stress. After about a year of this, Chitra was trained enough to take care of Srikar’s therapy needs completely. We also developed a shared understanding of ABA that helps us a lot in managing Srikar at home. Venu went back to work to clean up the red ink on our family balance sheets.

School versus skills

When Srikar turned three and half, we sent him to school. We also sent him to school once more later when he turned four and half. From these two experiences, we have learnt a few things. One, it really depends on the people dealing with the child. An understanding teacher can manage the child much better but unfortunately there are only so many of them around. Two, irrespective of the teacher, it is important that the child has some basic skills expected in a classroom. If he is busy shouting at everything, and there is no structured intervention that helps him handle that behavior, there is pretty much no point sending him to school. As a larger point, it is important to equip the child with the skills required in a given situation before exposing him to that situation. If we could throw the child into an unfamiliar situation and he would pick up the skills required through interactions with others, he wouldn’t be autistic, would he be?

When we sent him to school, we were letting him out in to an unstructured environment where his various behaviors interfered with his learning. His behaviors served as distractions for the class. In one situation, he became a plaything for the entire class. The biggest problem was that we were not getting feedback from the school at the level of detail we needed to continue working with him and he could not tell us anything. In both the instances, his behaviors increased dramatically after being in the school for some time and we were not getting any useful data that would help us train him to manage the behaviors.

We were afraid of this getting out of hand. Srikar could eventually be branded as a problem child or a slow learner or whatever other labels the school thinks appropriate. This could also result in loss of self confidence. In our minds, the potential harm in these situations far outweighed the benefits. Incidentally, one of the major benefits of sending him to school was that we got a lot of free time. We could send him to school and have 4 to 6 hours of uninterrupted time to work and relax, which was a major luxury at that time.

We also considered the most common argument presented in favor of sending kids to school – that he would learn ‘social skills’ at school. While social skills are important, we felt that it was unrealistic to expect Srikar to go to school and pick up the skills himself. Instead, we felt it would be more helpful to ‘teach’ these skills through practice in controlled settings.

So, we decided to keep him at home and build his skills rather than send him to school. It also helped that both of us have experience with teaching and are confident of our ability to educate Srikar till Grade 10 and beyond, if required.

Building basic skills

That brings us to some of the basic skills we focused on building and some approaches we used to build these.

Communication

The most important skill we focused on was the ability to communicate. When Srikar was diagnosed, he did have a large vocabulary but would not use sentences for communication. He would not answer, much less ask, questions. He would sing a full song but would not utter a single sentence by way of communication. We felt that his inability to convey his feelings and understand what was being said to him was causing a lot of frustration. So, this was a high priority item.

Initially, we taught him to ask for things he wanted, by insisting that he ask – initially in words and then using full sentences. Then we taught him to answer questions like ‘what is this?’. Each time we would prompt him till he said the words. We taught him the idea of choice by asking him ‘what color gems do you want?’ and consistently giving him the color he asked for. He eventually figured out that he could ask for what he wants. The time we taught him to say NO was the turning point. Once he figured out that he had a choice and could ask for what he wants and that he could say NO and influence things, he got on to a steep learning curve. He understood the power of communication.  He enjoyed learning and exhibited pleasure in using it in new situations, opening up a two way channel of communication. Today he can very clearly communicate his needs, wants and feelings, most of the time.

Anxiety management

The other area of focus has been managing his anxieties. We used a variety of approaches for this. Scheduling is an important tool we used for this. Initially, we would schedule his entire day and make sure the day runs exactly according to schedule. Then we moved on to making a loose schedule with one or two vacant slots that he could fill himself. These days his day runs on a schedule discussed in the morning and modified as the day progresses.

Controlled exposure and training is another approach. For example, we noticed that he was not behaving appropriately in restaurants – he would not like the waiter clearing the plates, would not want to wait etc. So, we started playing a restaurant game at home where we would pretend like we were in a restaurant, complete with printed menu cards, table-chair setting and a pretend-waiter. Once we had him behaving reasonably well in this controlled setting, we started taking him out to restaurants almost on a schedule. Every day, we would take him to a restaurant. We would write a sequence of things that would happen at the restaurant and make sure they happen in the same sequence. We would explain desirable behaviors to him and reward him for appropriate behaviors. In about three months, he learnt enough about expected behavior at restaurants. Today, he goes to a restaurant, reads a menu, orders what he wants and so on, though he insists on having ice cream after every meal. We have successfully used this approach to teach him how to handle going to a mall, a shoe shop, going to a friend’s place, playing with friends, going to park, shopping at a super market, getting a haircut, going to a doctor, social greetings etc. These days, we need not even go through the entire process – we explain what he can expect and what we expect of him and he is able to manage it most of the time.

Social skills

Srikar loves running and jumping around with kids.  Initially, he would do it for about 10 minutes and then go into his own world or pick up a book.  He wouldn’t follow peer instructions, wouldn’t pay attention to what they were doing or how they were having fun.

When we sent him to the dance class, he learnt peer imitation. He also went to a Group Skills programme as part of therapy, where he learnt many games and desirable behaviors in a peer group setting. At home, we played physical games and board games, each time teaching him appropriate behaviors like waiting for his turn, moving the coins correctly and eventually, losing gracefully.

Once he had the basic skills to play games, we started to play physical games on the road outside our house. Slowly, other kids started joining in. Once again, we used each opportunity teach him appropriate behaviors. Chitra would be there conducting lots of new games with Srikar and his friends, creating some sort of structured play. This helped us address Srikar’s anxiety issues and other children also enjoyed all the new games. We bought (and continue to buy) lots of toys and books to keep everyone engaged. This went on for about a year and half with Chitra fading herself out slowly.

We slowly found a set of friends for him who would come home to play or he could go to their place to play. The children were becoming more comfortable with Srikar and vice versa.  Most importantly, the mothers were pitching in wherever required. Very soon, children were managing the play time themselves, with Chitra intervening only when needed.

These days Srikar actively goes out to play. He orders his friends around and organizes games.  He loves to play cricket though his bowling range is very less. He conducts races, What’s the time Mr. Fox, Duck duck goose etc. Chitra keeps checking on him every 15 minutes when she is busy. Otherwise, she goes and participates in the games, not wanting to miss any teaching opportunities since Srikar continues to have issues as new situations crop up.

He also loves to share food with his friends.  So, Chitra conducts baking and cooking sessions where the children gather to cook by themselves and then eat.  Children in our neighborhood know that at Srikar’s place they can always get a snack and do make use of that opportunity at least once a month.

Exposure

While Srikar does not go to school, we try and include different activities and programs in his schedule so that he gets exposure to different areas and gets to build skills. When he was younger, we sent him to a dance class to help him develop gross motor skills. As he grew older, we changed this to a taekwondo class where he has now got two color belts. Similarly, he has been going to a music class for the last 3 years. Out of his own initiative, he started a drawing class recently, where we do not shadow him at all. He also wants to go to a ‘space ship riding class’ but he is willing to wait another 20 years for it. We go on frequent walks. We take him to adventure camps, day trips, summer camps, science exhibitions etc. We send him on regular play dates with his peers and to every birthday party in our neighborhood. We shadow him most of the time and use every opportunity to teach him and his friends the appropriate ways to deal with issues that crop up. These activities and outings ensure that he is not bored and has the motivation to keep himself going. He is also much less hyper active as he gets to spend a lot of his excess energy.

What we are gunning for

When we embarked on this journey, we asked ourselves what we were aiming for. Our answer was to make him independent – in the sense that he will be able to plan and manage his day, be able to manage his behaviors and his learning – by the time he is about 12. There did not seem much point in us planning for anything beyond either that time frame or that goal. The way we see it, we are tracking that goal right now. Hopefully, with the right interventions and Srikar continuing to cooperate as much as he does now, we are going to get there.

Hum honge kaamyaab and hogi shanty charon ore, soon enough.

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Chitra Venugopal née Seshadri has a B.Sc. and worked in a bank for 6 years before having Srikar. Currently, she works with children with autism under the guidance of Suruchi Sancheti in Bangalore.

Venugopal aka GVGK Raju has a degree in Electrical Engineering and a PGDM from the IIM Bangalore. He has worked as an Assistant Professor in Engineering and as a management consultant. Currently, he works with New Rubric Solutions, a startup in education space.

A version of this article was also published in Autism Network journal.