An Outsider’s Inside story - part 2 of 3
23 March, 2022
I have often been asked that if I could go back in time and give a message to myself or my caretakers what would it be? I have not answered that before but I will today. To myself, I'll obviously just give the current data about autism and what we know so far and a tape-recorded version of Adele’s "Easy on me" for both myself to listen to and to use for communication purposes.
To my caretakers, just two words "believe me". I have seen many parents laugh at stories children make up or agree with them in patronizing tones. I have seen parents expressing disapproval when they see their child is blatantly "lying". But I have often wondered if they considered the possibility that if seemingly unbelievable stories, were not stories at all. Which they would have known if they considered the possibility for a moment and explored further?
I have always perceived being doubted as a direct attack on my integrity, which I have always excessively valued. My pride and integrity have been interwoven in a strange fashion.
When I used to be watching cartoons and used to "get lost in my world" without realizing someone has changed the channels and be questioned about watching content I was not allowed to. I had no explanation besides repeatedly declaring "I was not". Similarly, I once told my cousin that I "could hear light". It took courage because I knew it sounded stupid. Even though she did not call me a liar she laughed, even gave it a name: 'Glitters'. I could not answer or explain it properly. But in both scenarios listed, and a few others, I was deeply offended, and my pride did not allow me to share any more with either for precisely 22 years to follow.
I would never have understood, about the light without doubting my sanity had many other autistic people not related similar experiences which are known as 'synaesthesia' in scientific terms which is defined as "a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to involuntary experiences in a second sensory or cognitive pathway" according to Cambridge.
Surprisingly it is not a novel term, and a lot of research has been done with the first recorded case attributed to Oxford university in 1690. I have experienced it on numerous occasions, more markedly in stressful situations. Just like stuttering or being excessively clumsy when anxious. But let alone parents of young children, How many of us (if any) would have even considered this or tried to rule it out as a possibility had a patient in an acute setting narrated a similar experience?
Now if have given the impression I had strict parents or lack of love. Both are wrong. The restrictions both with regards to my behaviour and my ideas of what is allowed were not imposed by my family, but my own understanding and interpretation of things, ideas and expressions which ( I discovered only recently) had been quite unusual if not wrong. Yes, my mom has been strict in many ways but only to raise me as a good person.
She even gave up on the job she dearly loved to raise me and my brother, and I know she loved it by remembering how happily she used to get ready. For her education came first, so she expressed her love by spending her time thinking about ideas on how to make learning interesting. We did not have Cocomelon back then so she made me cookies in shape of alphabets and numbers, and added colours in them .
Now at that age, I could pick up on the amount of time and effort she was putting in, but I did not see it as an expression of love, I saw it as her wish for me to learn and excel and well, eat.
So I diligently did both, even when I did not want to. There are many things my mom and I talked about, during and after the assessment where she told me about things I "loved" as a child. Which made me emotional, sad and angry simultaneously. Emotional because she remembered, sad because she had got it wrong. And angry because I never had the courage to tell her the truth, back then or even now.
The truth being, I never had a sweet tooth or liked cookies. In fact, they were hard sometimes, and too soft at others. I ate them to make her "happy". In fact, even after learning, I would specially request her to make the cookies, to see her smile when I return the empty plate ( sometimes hiding them outside and LYING I had eaten them) and sometimes purely as a form of connection. Now it sounds like a sweet thing to do for a child right? In fact, some of you might have reacted with an "aww" if I was narrating the story in person. But it was not that simple.
Because all this time my mom was going an extra mile for me, I was doing her "a favour", with a strange resentment building inside slowly. What I really wanted was for her to just be with me, by my side always like nana. And she would have gladly done that had I asked, but I never did because in my head it was "wrong". Anything without a "point" or being "productive" was not justified in my head, so no matter how much I wanted it I could never openly ask.
I made things more difficult by not being able to communicate what "love" I wanted because I remember getting a kiss on my head often. That did not feel good. My head and hair have been a marked territory to date, that was reserved only for my nana. Now anyone who has spent a lot of time with me knows that including my best friends that even though I can be extremely clingy, love cuddles and hugs, but touch my head, and face my wrath.
My wrath being an annoyed "NO!" or doing something that makes you equally uncomfortable.
Similarly, the only time I have experienced jealousy was the effortlessness with which my younger brother could connect with my mom and do what I had been trying for a long time with such ease and entitlement. I am not talking about a unique talent, in fact, something I have seen many children do, he used to hold and feel mama’s hair before sleeping. Now my mom had never stopped me from doing that, in fact, she had plenty of hair and long enough for both of us to use.
I have spent nights experimenting, as both she and my brother slept thinking I am asleep too. While I was trying to make myself like the texture of hair and somehow procure that sense of connection through them. I could not. I even tried taking out the hair from my brother’s hand slowly without waking him up so that I could see if having all of the hair to myself would make a difference? It did not.
I kept my mom up for a long time though, asking her to tell me stories, the same three stories every night sometimes more than once a night. The cruellest bit was that It was very important for me, that she be looking at me directly and would turn her face with my hands every time she moved it an inch. Sometimes she would fall asleep and I would keep on waking her up until the story was complete. After that, I would watch her sleep, think about how could one possibly milk, liquid gold out of a goat that one of the characters in the stories did. And fall asleep on the other side.
I had a pretty ordinary school life, I had my share of problems, and my share of good memories but they were never problems I could identify because I never understood they were. When someone wanted to take my lunch I took it as a sign of endearment and happily gave it. I created some problems for others though and only a few months ago understood why I was not liked by my peers in school except my best friends and their families in primary school but adored by teachers.
Most of those problems rose from my urge to restore the balance in the world by "doing the right" thing and taking things literally. It was not until O-levels when a classmate clearly whispered to me what I was supposed to do/say to the teacher when she asked me about who rubbed the board when I realized the power of withholding the truth. It went so successfully that I still stick to it unless there is no other option, and it is harmful for someone.
I later became absolutely pro at mediating arguments and fitting in to literally any environment by virtue of my learning and noticing details. It helped my friends a lot later, in a variety of scenarios but as far as my own conflicts were concerned, I still acted with the same naivety of a seven-year-old who would need “an adult “who knew them to interfere and present their case to the other party. It was difficult to understand vague concepts like “space” because my definitions were different. So were the measures when it came to things like success and investments. But the most difficult part always has been letting go without understanding or until it “makes sense”.
