Initial steps and considerations

What initial steps did you take after diagnosis? What were the alternatives you considered? How did it work out?

S-Ish - We enrolled him in therapy for early intervention but things happening there scared me. Ish would just go into the center, cry and come back. In the occupational therapy assessments, they said he has mild to moderate autism. The occupational therapist suggested a few centers. Speech therapy was difficult to find. In none of the centers we were allowed inside and we didn’t know much about what was happening inside. I would just see the materials used at the center and repeat them at home with my own knowledge. Those were out of my own will. There were no inputs from any of the centers. In one of the centers, they suggested a hands-on training course, but that’s about it. Through different parents we met at different centers, and the therapists, we kept trying different centers for speech, Occupational Therapy and ABA. Most of the parents suggested alternative medicine treatments as well but we didn’t want to go for it due to lack of empirical evidence.

HM - We continued therapy in the same center for 2 years. M was going to OT and special education. They would tell things we could try at home, but nothing regarding behavior management. We were still clueless about that. It was especially difficult with M, as he had a lot of behaviors. Eating was an issue with him, he would fall sick often, cry constantly and that would also affect me emotionally. He also went to a Montessori school briefly where he would just go, cry in class, jump on the trampoline and come back. We tried two Montessori schools in the hope that if he is in a group, he would pick up some skills. Nothing like that happened. We considered alternative medicine especially for his immunity. We tried homeopathy when he was 6 years old. We also tried a tapping therapy. By then my husband felt that M was not improving. He did the research and we joined a good therapy center.

SS - In India, we couldn’t find anything suitable. We decided to go back to the US and once we were back, we tried HyperBaric Oxygen Treatment and the B12 shot. These were suggested by many people and we learnt from our research that it is safe and does not have side effects. We were told that S might have Attention Deficit Hyperactive Disorder (ADHD). We feel the B12 shot helped S with certain symptoms like hyperactiveness alone. In the US they use sign language with the kids in therapy, by default. There it is more like going with the flow of the child and not pushing them to do anything. We were not satisfied, but we didn’t have many options either. S was also briefly going to daycare where I would drop and the father would pick him. I feel that may have affected our mother son relationship at that point because I would always drop. S also became a picky eater meanwhile. He would eat very selective foods - warm/ food that I cook/ it should be served in a bowl, strictly no milk etc. He went to school along with a shadow teacher while we were in the US, but it wasn’t very effective. We also went through other challenges like having a non-supportive family, and ineffective therapy centers. I did not get any parent training anywhere. Much later, through a friend, we found out about a center in India providing Applied Behavior Analysis (ABA). We relocated and I would say the game changer was when we started writing down the instructions for S. S started following through so quickly. I realized how bothered he was with our verbal inputs. There was also a good set of therapists and structure in place for the kids. The schedule and transparency made me feel comfortable and felt I should have started here earlier.

SG- We started special education early intervention when he was 2 years old and speech and occupational therapy too. He was picking up skills, but we did give in to the influence of other parents of trying new things for 8 months in between. We tried Ayurveda when he was 5 years old. G was naturally a calm kid while we let him be. Through Ayurveda they again gave calming medicines only. So I didn’t see any significant differences. Another major reason I dropped out of it was following the GFCF Diet. G is a foodie and I felt bad in restraining him from so many foods. It was also difficult for me to follow all the time. I then started believing in my efforts and myself for G.