Autism Acceptance Story: How My Pediatrician Failed To See My Son’s Autism?

This Autism Awareness and Acceptance Month, Pregnancy to Parenthood had a chance of a lifetime to reach many autism warrior moms and listen to their autism stories. The most special and inspiring was of Nidhi Shrivastava (Teacher and Counselor) and her son Nitesh (23 years old jolly and a very special young man). Nidhi shares her inspiring autism acceptance story to help moms who are struggling to get a proper diagnosis for their kids.

Today is World Autism Awareness Day. I am sure we all have heard or known about Autism Spectrum Disorder, but nothing prepares you for the journey when you have a child with Autism. For me, this journey started on a beautiful September morning in 1998 when my elder son, Nitesh was born. He was the most beautiful child, would rarely cry, and was so cute that I was scared in the hospital that someone would steal him. He was born in Allahabad, India and there were a lot of cases of newborns being stolen at the time.

Fast forward to when he was two years and was not talking that the warning bells rang and as we were in Chennai at the time we took him to a renowned pediatrician and put our fears before her. She suggested it might be the language barrier or our family not being with him that could have caused the delay.

So off I went to my parent’s house in Allahabad for six months hoping that he would start communicating. It was a very difficult time living away from my husband and answering numerous questions from relatives about what was wrong with him. There was no change in him at the end and I went back to Chennai.

Around the same time, I chanced to read an article in The Times of India Sunday edition, and it was as if suddenly everything fell into place. All the pieces of the jigsaw were fixed and I could see a picture that was scary and daunting. Hoping in my heart that all my instincts were wrong, I cut out that cutting and started researching to find out more about Autism. It was very difficult for me to comprehend as I had a Masters in Biochemistry and was a trained teacher with a couple of years of experience in teaching and yet had never heard or come across this word.

The doctor rubbished my fears and suggested I was an over-possessive and over-ambitious mum who was just worried needlessly. I wanted to believe her but somewhere my instincts told me something was wrong. From there on it was a long struggle to get his diagnosis from a child psychologist who first put him on medication to control his hyperactivity but they caused a severe reaction so we had to stop them. Then the psychologist advised different therapies for him. He must have been 4 at that time and no playschool would take him.

Autism Acceptance

A long process of self-blame, why me, crying, pleading, finally, acceptance started accompanied by numerous trips to the doctors, speech therapists, and occupational therapists. I remember that 1-hour session at the occupational therapist being hardest where he would cry constantly inside and I would sit outside the room and cry silently. Needless to say, it caused a lot of emotional and financial stress especially since my husband had started to continue his further education at the time.

Whatever people suggested we did because we were so desperate. Siddha and ayurvedic massages, Brahmini oil, a special educator at home, we did everything but however hard we tried we had to concede he would never be normal, so we had to go into his world and stop trying him to be like others. And look where we are today, Nitesh is 23. He still doesn’t speak but is able to communicate his needs in some form or another.

Autism acceptance story
My SOn Nitesh and Me- And our Autism Acceptance Story

Nitesh brings so much love, happiness, and joy to our lives. He has been a blessing in so many ways, making me a more grounded, accepting, compassionate and loving person. He has taught me to be strong, calm, patient, and have faith in the Almighty. He has been a blessing in so many ways as I have met so many wonderful people through him.

To all the parents, caregivers, and friends who may have children with autism or who know someone with autism I would just like to say do not be scared by them. You just need to give them love, acceptance and try to fit in their world rather than making them fit in your own. “Autism Acceptance” is the key.

Their world is no less beautiful and colorful all you need is to change your perspective. Long ago when Nitesh was diagnosed I decided to forget everything I had learned and started learning again with my son, this time his way and I have become so much richer. The journey forward is not easy but it is exciting and we have each other to hold on to and that is most important.

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