Being an Autistic Mother of an Autistic Son – Life Story of Preeti DixitAbility India
I have always felt I was different. Even as a child, I never felt connected with anyone other than my parents and my brother. I never felt like I belonged anywhere except at home. I always felt like an outsider in social situations. I felt like I was sitting on the sidelines observing rather than participating, trying to decipher the complex interactions taking place around me. I saw people being extremely nice to each other on their faces and turning around and being extremely nasty to each other behind their backs. I didn’t understand what was going on and it made me feel very confused and scared. This is where my anxiety first began – with me not understanding and being unable to predict the behavior of the people around me. It made me feel extremely unsafe. As the years passed, my confusion and anxiety only increased as I was unable to voice what I was feeling since I didn’t understand it myself. I was first diagnosed with anxiety when I was 16. I met my husband when I was 18 and got married when I was 21.
My husband was one if the first people outside my family whom I felt connected with. We became really good friends and couldn’t wait to get married. However, what I did not anticipate was how marriage would come with a lot of unsaid social expectations. I found it extremely difficult to navigate them and really struggled to meet them. Luckily, my husband and I moved to the US, where it was just him and me, and we had a lot of fun. After 6 years of enjoying each other’s company, we were both ready to have a child. Our son was born on a beautiful day in June, 2003. I loved him and felt connected with him since the moment I found out I was pregnant, and fell completely, head over heels in love with him when he was born and placed in my arms for the first time. We were ecstatic to bring him home from the hospital and looked forward to being a family. Our son struggled with severe sleep issues, feeding issues, gastrointestinal issues and had developmental delays. This took a toll on us and we decided to move back to India so that we would have some help raising him. I still did not think anything was “wrong” with our son because he was amazingly intelligent, lively, bubbly, energetic and happy boy.
It was only when he was three years old and still not speaking that I began to feel concerned. Everything came to a head when he started kindergarten and couldn’t handle the school environment. His teacher called us and asked us to take him to a child psychologist, who diagnosed him with autism. We had no idea what autism meant at that point of time. Once we came back home, I immediately went on the internet to read about autism. By the time I was done, it was like all the pieces of the puzzle fell into place. All the challenges and struggles that our son was going through began to make sense. We were devastated thinking that our son was going to struggle all his life, but also relieved that we could help him now that we knew he what the “problem” was. As my son grew up, I slowly started seeing a lot of myself in him. My husband would joke that my son and I were just like each other. We were a team and we would gang up against my husband to get our way. The more I thought about it, the more I started wondering if I might be autistic as well. After all, a lot of the struggles that my son was going through, I had also gone through in my life, which is why I could connect with him and help him. I finally decided to get myself assessed for autism and got my official autism diagnosis from Action for Autism. I was extremely relieved to finally know why I was the way I was. My whole life made sense to me. I have been guiding parents of autistic children for over a decade now, but with my autism diagnosis and with my son also becoming an adult now, I decided to shift my focus from guiding parents to helping autistic adults. My son and I created the C.A.R.E for Autism community to connect autistic adults with each other and give them a platform to share their voices and stories. There is a great need to advocate for autistic adults in our country as they are left to fend for themselves after they grow up. My son was probably among the first generation of autistics in India to have an early diagnosis. With his generation entering adulthood, the lack of awareness of autism in adults and the accommodations available to them has become glaringly obvious. Until now, the focus of the medical fraternity and advocacy organizations has been on childhood autism, but we can no longer afford for it to be limited to childhood. Autistic children become autistic adults, and with the number of children being diagnosed with autism daily, we need to prepare for when they will become adults. My son and I have already started advocating for autistic adults through our organization and hope that more people will join us.
By: Preeti Dixit Bangalore, Karnataka
Autistic Mother and Co-founder of C.A.R.E for Autism