Just after diagnosis
What were your feelings and thoughts before and immediately after the diagnosis? Was there a period of uncertainty?
S-Ish - I was in shock and denial. I knew vaguely about Autism from what we studied as part of our medical course, but nothing much. It was during the before and after diagnosis period when I gathered the information. I would cry almost everyday after the diagnosis. There was a period of uncertainty for about a month. But my sister and husband were very supportive through the process. My sister would send encouraging videos/ resources. My husband believes that any problem will have a solution and he said we would be able to do something. So let’s figure that out. There was now a shift in my career goals. My initial expectation was that my mother would take care of my son and I can complete my Postgraduate (PG) course. Now I had to take a break from my PG course and I decided to take care of the child full time. He became my first priority. I am very glad that I had and have my family’s support. My father was slightly disappointed that I am unable to focus on my career and hoped that I would get back at it.
HM - Only M and I had gone for the assessment while my spouse was at his office. When they provided the diagnosis, I was in shock and sent an SMS to my husband. He also took off for the day and came immediately. M was 1 year and 8 months old then. I was scared, I cried and didn’t eat properly for about a week. My husband also took a week’s time to come to terms with this. We started therapy straightaway at the same center, but we were also trying to seek help from a neurologist, visited temples, made offerings and visited astrologers on the side. That was our period of uncertainty. We also blindly followed whatever was referred to at the center. The professionals we encountered did not give extended support, but they did their work and did not give any false hope either. Other parents sailing in the same boat were my source of comfort at that point.
SS - Soon after he was diagnosed, we came to India thinking he would improve by being around the extended family. We also wanted to check out options available in India. But we couldn’t get any help. Family was not supportive and we couldn’t find the right therapists. It was so frustrating. We were clueless and returned to the US because it felt like there was at least something we could do there. Most people said that he would improve with age and my family members didn’t believe in the idea of therapy. It took me 8 years to accept S’s autism. Meanwhile I would question why this is happening only to me and had a blind hope that S would become normal.
SG - I would say that I didn’t let the diagnosis affect me too much immediately. I thought this is something I know very little of. I need to know more and see what I can try. We were told that there is no cure. That was painful and uncomfortable for almost a year. I was expecting G to be a normal child or at least just a slow learner and what came to us was unexpected. But I did not go to the denial stage. I was aware and accepting of what has come to us. Questions of what next and the confusion were there. On that front, I wish during our first diagnosis itself, they spent a little more time with us to brief us about the condition. My family gave me all the emotional and moral support I required and I am thankful for that. The suggestions thrown at us from different directions to try homeopathy, ayurveda etc., lead us to a confused state and we didn’t know what to do. However, we did not waste much time. We enrolled him for speech and occupational therapy right away. The special education center also provided us with parent training and also we could take counseling sessions. That was helpful. I stopped comparing G with other kids and feeling bad about it.