The Meaningful Ride from Hope to Despondency and Back Again
“Let’s rule out autism,” said our pediatrician in Mumbai. He then looked at me and asked, “Do you know what autism is?” Confused, I nodded thinking that it must be in some way connected with atavism which meant something about some characteristics reappearing after prolonged absence. This was in 2001 and our daughter was about two and a half years old. As we walked back home my wife, the stronger of the two of us, was already in tears – a world had come apart. Meeting with a neurologist followed and I suddenly found myself identifying with some of the kids undergoing assessment there, flapping their hands and rocking back and forth…
A wise friend told us that this would mean redefining our lives as we know it. Her prophetic words were that we needed to be prepared to make changes to the way we see and lead our lives. It was only in hindsight that I could understand what redefining our lives really meant. The first few years were a bit like being on a roller coaster. We were scared and confused. When you are in panic mode and want out, it is actually accelerating! Someone recommended Catherine Maurice’s Let Me Hear Your Voice. While reading the book, I lost count of the number of times I found myself agreeing vehemently with the author and it seeded hope in the form of using behavior therapy based on the principles of Applied Behavioral Analysis (ABA).
Life saw me in the United States briefly alone and then migrating to the UK with my family. One of the redefining acts was for my mum and my wife’s parents to commit to staying with us for several months at a time, taking turns to ensure continuous presence in our home over all these years. We are eternally grateful to the extended family system and values which helped us and our child to progress.
Another redefining act was me going without a job for nearly two years in a new country. I was no longer the main bread-winner. Suddenly, it was my wife. She hung on through some very difficult times and fortunately started thriving in her work which even today helps to fund the substantial investments we need to make in interventions and to secure our child’s future.
Life also saw me initially trying to learn how to provide behavior therapy myself. After a couple of years of experimenting with some home-grown behavior therapy, we brought in a knowledgeable consultant who taught us how to formally apply the principles of ABA. During the first meeting, while I was still skeptical, I saw her manipulate a few factors and bingo! Our child was scooping rice and eating by herself nicely! I managed to teach my child non-verbal imitation and helped her gain fluency in matching. Thereafter, as I started working again (supported by the child’s grandparents who would hold down the fort at home) we regularly hired tutors for three hours a day.
Between the consultant and tutors they brought about remarkable changes. My daughter’s behavior became a lot more manageable. She was able to demonstrate a knowledge of (label) over 50-60 everyday objects, follow many one-step instructions, and ask for all of her favorite snacks and leisure activities using signs. While it may not be necessary for all children with autism, the Gluten Free Casein Free (GFCF) diet resulted in a breakthrough for my daughter as her potty behavior came under control. She learned to play with GameCube and started learning to operate the computer to play some of her favorite videos and dabble in some painting.
There were some difficult moments, like when she ran out of our home with her frail grandma chasing after her. I drove around the neighborhood and found them both far away from home. There were many tense days. For example, she once wrenched her hand free as were walking and ran into a speeding van completely unaware of any danger. She was lucky to have survived with just a fracture. It could have been a lot worse.
Our dentist in the UK, while completing multiple extractions early on, advised us to eliminate sugar completely from my daughter’s diet as she discovered that my daughter’s teeth were prone to cavities. This in one-stroke ruled out a million favorites from chocolates to cakes to fruits and raisins.
There were also innumerable moments of delight, like the first time she signed for Dosa (a food item) when she was hungry, when she first came up and tapped her tutor’s hand to request play spontaneously, the time she figured out how to find and use the key to open the lock and get to the garden independently, the first time she signed for car to indicate that she wanted to go out, etc.
After many years in the UK, we migrated back to India last year. While we did have reservations initially, we were fortunate to find to a consultant who was a Board Certified Behavior Analyst and was kind enough to take charge of the program to leapfrog my daughter’s acquisition of skills and to train me. My daughter also goes to the center run by the consultant which applies the latest research knowledge in the field of ABA to teach children with learning disabilities. So we continue to run the home program in parallel with some great guidance here in India. Life also sees me working towards qualifying to be a behavior therapist myself. With a number of friends and relatives visiting us more often here, our child’s interest in social relationships is beginning to emerge. Some basic vocalization also seems to be emerging. Fingers crossed. There is a nice gaze and lots of smiles when she looks familiar people in the eye and … hopes blossom again… and again.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.