Guest post by Adita Divecha, Karan’s mother
I still remember the day my son, Karan, was diagnosed as autistic. Until that point, I had never heard of that word.
Karan’s developmental milestones were already delayed. He had sat up late, started walking late and at the age of one-and-a-half only babbled. I was a little worried but most people said that boys usually passed their milestones later than girls. At the age of two he had suddenly stopped looking at us, did not respond when we called to him and had started this funny ritual of running in circles, flapping his hands.
At this time, we were also looking to put him in a nursery school. The lady there who took our interview suggested that we get him checked by a doctor who specializes in developmental disorders. She said this because he was not responding to her and was being hyperactive and screaming and running around flapping his arms. Actually I felt she was a little rude in the way she was talking…she did not seem concerned…she just seemed rude.
So we went to Mumbai, India to see a doctor who specialized in developmental disorders when Karan was two-and-a-half. This doctor was one who was so busy that one had to take an appointment months in advance. Anyway we finally got to see him and he looked at Karan who was busy running around the room flapping his hands. I think we were there just for about 15-20 mins and the doctor said that he felt the child was definitely ‘autistic’. He explained a little what that meant and asked us to get a few tests done and we had to come back to him after we got the results.
So that started the tests…cant remember all of them…it was such a long time ago…but there were blood tests, EEG, Fragile X and some others.The Fragile X test was to see if his X chromosome was faulty…to see if he inherited his autism from his mother. Thankfully that was negative. I say “thankfully” because usually in our Indian society, people are very eager and happy to blame the mother if anything is wrong with the child.
After we went back to the doctor, he confirmed that Karan was on the autism spectrum but since we were based in Dubai, he suggested we get him assessed and diagnosed by a doctor there.
I had never heard of “Autism spectrum disorder” before. What I gathered from the doctor was that it was a lifelong situation which could only be helped with therapy and medication. It was a shock as I did not know how to react. I was confused and angry at the same time. Why did it have to be my child? But there was no answer.
But when I look back on those days, I realise that I never cried in front of anyone even though my heart was bursting with this enormous amount of pain. I have this habit of crying alone in the bathroom and showing the outside world what a strong person I am. All nonsense of course.
Anyway, all I knew was that we had to do all we could to help Karan come out of his shell and I was going to do it to the best of my ability.