Just after diagnosis

What were your feelings and thoughts before and immediately after the diagnosis? Was there a period of uncertainty?

S-Am

I didn’t understand what was going on. I had been believing that everything was normal. How could something be wrong now? I cried a lot. We did not understand and we were not satisfied either. So we wanted to get a 2nd opinion and went to NIMHANS. There they said symptoms are there but also told us not to worry and fear so much as he will be fine slowly. We were still confused.

P-M

I was so confused because we did not know the head or tail of Autism and no one gave us a clear picture. He was diagnosed at NIMHANS and they suggested we take their therapy that happens once in every 3 months, but no more information was given. Both my husband and I were very upset. I didn’t eat for about a week and kept crying. Then I had to tell myself that I need to be strong for my son and I have to change. Yet, for about a year things were uncertain as M was taking therapy only at NIMHANS once every 3 months and we did not know how to manage him nor did we see any improvements. I felt helpless as managing 2 children was difficult. My mother would come for 1 week or 2 and help out, but I had to run the show.

Y-An

After the possible GDD diagnosis when we went for review at 3.5 years, I kept praying that nothing should be wrong. After hearing the word, I cried in front of the doctor. There was fear of the future and it took me 2-3 months to accept the fact and now I am hopeful that there will be something that can be done to manage this. An was attending school back then and they were very supportive and caring. A special educator would come and teach him once or twice a week and ensure there is some learning happening. At 2 years when they said he might have GDD itself I started looking up and reading and enquiring about the various possibilities. So after the Autism diagnosis there was no period of uncertainty as such.

J-S

The term sounded like Greek and latin. We have never heard of this before. We were very worried. S was our first child. He was born 4 years after our marriage and through treatment. He was very precious to us. That 1 year after that was very difficult. S was getting more hyper and aggressive. I was still processing this. I used to get very irritated and show my frustration to my husband. My husband was in a better place due to the way he generally sees things and would say “This is not a problem we created for ourselves. This is God-given and there will also be a solution to this.” I also got pregnant with my 2nd child that year, so I had to take care of myself. Then I became calmer with the support of my family.