A Marvellous Journey Through Life with Autism

This section of the SAI Connections blog – Autism Success Stories – is dedicated to success stories of autistic children and their families. We want to celebrate the developments and achievements of these stars and their families, and through them, want to let you know that there is always hope and support for you (as a parent or a professional), if you are looking for it.

Our first in the list of autism success stories is about 20-year-old Rishi Patnaik, and his parents Sharmistha and Amitabh. Sharmistha is a management consultant and Amitabh is a Bollywood film editor. Rishi has been with SAI Connections for a little over 2 years now. Here are the parents sharing their journey through the years and how far they have come.

Rishi was diagnosed with autism at the age of 3. I was devastated and confused. We had no idea what autism was, and there was a lot of grief. “He is still young, there is hope that he will get out of it”, we kept thinking. It wasn’t until a few years later (until Rishi was 9 years old), that we realized that autism would become a part of our family forever.

You can never prepare yourself for living with and caring for someone with autism. Conventional parenting techniques just don’t work. It was the same for us. Rishi was quite a handful in his early years – meltdowns, aggressive behaviors and not being able to communicate or comprehend. So interacting with him was pretty much a one-way street. Added to that was the fact that he was dragged out of his comfort zone about 5 years ago when we moved to Mumbai from Delhi.

About two years ago, Rishi joined SAI Connections, and soon was on the Relationship Development Intervention program. Over the course of this time, Rishi has developed into a wonderfully calm, composed, confident and disciplined young man. While for us, the change has been very gradual, these results are much more apparent to those who meet him after long intervals because they can see a different person altogether. They are amazed to see the remarkable improvement in Rishi over the past few years. They see how he has quietened down (by choice, not compulsion), how he behaves, and the ease with which he interacts with people.

He is now quite self-sufficient and independent. He is also able to communicate his own needs with gestures or signs, which makes it a lot easier for people who are caring for him. On a few occasions, we have been able to leave him with friends when both of us have been late at work. Rishi has gone over, had his dinner, enjoyed himself and not caused any disruption in their lives. We can now rely on him to conduct himself respectfully and be a person whom others are delighted to have over. No longer do we have to monitor him 24/7, and in fact he is quite happy to be left to his own devices – be it playing with his toys or iPad, watching videos on YouTube or simply hanging out on the balcony and enjoying the view.

Sharmistha, Rishi and Amitabh

There has been great progress to his comprehension, so now he is also able to carry out tasks based on instructions provided. He helps with the household chores and even helps in the cooking. Baking is a newfound hobby, and Rishi has achieved a fair amount of competence in making cakes and cupcakes. He is also a keen observer and if he finds something in the house that needs fixing, he will draw our attention to it, sometimes by pulling out the tools required to fix it.

We have an active social life that Rishi is equally a part of. From attending weddings and other social ceremonies with large crowds, visiting places of interest, watching movies in theatres or just simply going out for a drive, Rishi is game for anything, confidently taking it all in his stride. We have travelled both within the country and abroad with him, and he is so resilient in these travels, not only putting up with new and unfamiliar people and places, but actually enjoying and appreciating them.

In closing, I would like to share a recent incident , which gives us a lot of heart.

We generally take walks along the seaside at Carter Road, Bandra, in the evenings. Rishi loves the place; he enjoys seeing people play musical instruments, children play around and all the activity on the street. He especially enjoys watching a bunch of boys play football. He doesn’t go on to the small field where they play, but stays on the footpath close by. As the ball goes up and down the field and the boys follow it, Rishi runs with them.

And then, just the other day, one of the boys kicked the ball to him. Rishi was initially puzzled. Maybe he was not comfortable with being shoved into the spotlight suddenly. He was hesitant, but hung in there. The other boys joined in and encouraged Rishi to kick the ball back, which he did. This back and forth went on a few times. The boys, who are about the same age as Rishi, engaged with him, and he responded. Rishi felt like he had a place for himself among them, and he took it. Typically, we tell Rishi what to do, and he does what he knows. But seeing him engage with strangers confidently, not run away, and respond to them gives us tremendous hope and satisfaction.

What I’m also happy about is the attitude towards autism and other special conditions. The boys engaged with Rishi. It was amazing to see strangers trying to include him in their game and making friends with him. I have never witnessed something like this before for our son. People are becoming aware and sensitized to the needs of these special children, which is a big win for us. A big win for everyone.

Kamini Lakhani’s thoughts:

I had tears in my eyes when Amitabh shared this story with our group at a recent meeting. This story emphasizes how social relatedness emerges in autism. It does not happen by magic. It is a gradual, step by step process where parents take responsibility of guiding the child and building up the guided participation relationship amongst them. This then permeates to others in the environment.

Amitabh and Sharmistha have worked very hard at developing this relationship with Rishi. I was bowled over by Rishi’s progress at a recent assessment. We were able to go back and forth with a complex ball play activity for over 20 minutes He referenced me beautifully and understood all social cues. I can see how this is impacting Rishi’s quality of life. He is an active participant in our newly launced patisserie. He takes responsibility of finding out what is being baked for the day and what his role is. Rishi started on this program when he was 18. There is hope for everyone.

If you are the parent or guardian of someone with autism or a learning disability, your family can achieve these remarkable results too. This parent training program will offer you all the support and guidance that you need for these landmark improvements.