Late diagnosis of Autism- exploring experiences of my son — By Ashuti Menon
मन – day की बात SpecialSaathi के साथ
“It’s a blackhole”…”I don’t even feel human anymore.” The note was any parent’s nightmare.
He was diagnosed with Autistic Spectrum Disorder at the age of 17. It was a very late diagnosis indeed.
Why and how we missed the signs is a story for another day. For now, I thought I would share with you what I learnt from my son post the diagnosis.
Blessed with a high IQ, he’s very good with expressing himself in writing and quite clear when expressing himself verbally, except in difficult or grey situations when he becomes awkward. In school, teachers used to be fond of him because his work was always done well, submitted on time, and he was never distracted in class. Tantrums were in abundance, but all within the confines of home.
When Covid hit, he had just entered the 11th grade and classes turned online. It’s then that we noticed him missing classes for the first time ever. Things got really rough, depression set in and he was lying around doing nothing at all in his 12th grade. One day, a note addressed to us was found on his desk. As panic struck, we rushed to find a solution, and in the process discovered ASD.
Along with the counsellor, we broke the news about the diagnosis to our son. And then for the first time, he exclaimed, “I always knew it. I had overheard some of my batchmates in Grade 7, referring to me as a probable Autistic.”
For a long time post the diagnosis, he would not converse with us. There would be phases when he would only communicate with us in writing. He refused to speak to us. One night though, when everyone else was sleeping, he decided to break his silence with me. What he said broke my heart, but also gave me a clear picture of what he had gone through.
These are some of the things he shared. He said, “For several years (between the ages of 10 and 17, especially the teenage years) I was like a robot. I used to walk to school alone (we, the parents, stopped accompanying him to school in a bid to make him independent. Other children had friends who would walk with them. He had none, so he would walk all alone). I would sit in the class all by myself, and only interact with the teacher if required.”. When I asked him, “What about recess?” he said, “I used to sit all alone during recess too and just bury myself in my books. I never looked at anyone else or spoke to anyone in the class ever. I used to finish my classes and walk back alone.” He added, “So I was a robot. A human being cannot operate like that. That was the only way I could survive.”
I asked him, “Were the children mean to you?”. He said, “Initially their teasing and meanness bothered me. But beyond a point, I didn’t care about them. I just shut myself in my world.” I told him, “It must have been really hard for you, all those years that we didn’t know about this diagnosis.” He told me, “You can’t imagine what it was like. Think about it. If you were marooned on an island, all alone for years together, what would your mental state be like?”. He added, “I could see the other island where everyone else was gathered together having fun, but I knew I couldn’t reach them. There was no way out. I was stuck.”
Autism is a spectrum and all individuals on the spectrum are different, in terms of their strengths and their challenges. Since my son’s diagnosis, I’ve read a lot of material on ASD, but what my child shared with me, gave me the best understanding on the subject. I believe sharing these feelings, straight from his heart, may help others who are dealing with children in similar situations or children who’re verbally lesser expressive.
Author- Ashuti Menon
Author is a mother to an 18 year old young boy who was diagnosed with Aspergers not very long ago. She is an HR professional with a flair for creative writing as well.
Creative representation of a blackhole and galaxies is done by Little CreativeSaathi Kabir Vernal, 11years from Hyderabad.