An Outsider’s Inside story - part 1 of 3

For most of my life, I have felt like an outsider even amongst the nearest ones. I have waited for “my people” to come and take me back to my planet for as long as I can remember because this planet always felt alien.

What if one day you get up and realize the life you were living was not real but just a reflection of reality? The phrase sounds straight out of a philosophy book or an episode of black mirror, but believe it or not, it is true for so many, who you might have come across in your everyday life as friends, colleagues, managers, employees or strangers.

In this piece of writing, I will try to explain how, as I take you on a journey with me. A journey that started 2.5 decades ago.

Working in healthcare, and especially in psychiatry, I have noticed quite a few things. One of them being the fact that people reach out for help only if something is causing a significant disruption in their day to day lives. Take parents for example or schools. Flags are raised when a child is being "too naughty" or "too quiet" or "too distracted". All the less wanted adjectives. But everything “positive” is taken as a measure of pride automatically without digging into how, why and possible implications.

Have you ever heard a parent be concerned about a child being "too smart" or "too sensible" or "too complacent", "too patient" or "too caring"?  Probably not. But don’t you think if deviation from the standard is a cause of concern, these factors too should be brought into the discussion? If not with the professionals, at least with the child? Before reinforcement of what we perceive as "good behaviour"?

I say this because I was one of those children who grew up to be a "successful" adult with a degree, great job and academic accolades. Naturally, I superficially took pride in all of that too Before I began shutting down both physically and mentally.

After a series of unfortunate events, Fortuna decided to strike me with a stroke of luck in terms of healthcare professionals I came across and I ended up being diagnosed with ADHD, and later autism.  

This might appear to you as a rare occurrence, (I used to think it was) but it wasn’t. In fact, I am beginning to doubt if most of the "rare conditions" we studied in med school are actually rare or rarely diagnosed if presentations drift away from the standard textbooks?

My view of ADHD and autism was that of most if not all junior doctors, based on what we study, and see both in practice and in media.  'young boys, hyperactive,  throwing tantrums, difficult to calm down, slow in achieving developmental milestones, delay in speech,  no empathy, lack of expression, no eye contact,  strict visible routines, next to no social functioning independently' and so on.

So I was understandably but (now shamefully) quite upset with the idea initially that I could be autistic. I had accepted ADHD before with much less reluctance and more enthusiasm as I felt it explained a lot of things I couldn’t make sense of before, I even spoke about it on an Instagram post to 'create awareness'.

If you were not in my head you would have seen it almost as if I was relieved. And a part of me was. But the part I did not show to anyone besides my mom was a deep sense of betrayal I felt by the medical education I had received. I had never learnt or seen things before in textbooks, notes or on media what I was learning now from my coaches, ND fellows and support groups.

But even though I just said "oh" when it was highlighted that I could be autistic and asked to seek further assessment if I wished. I was considerably upset.  Not just because of the revelations but also blatant dismissal from anyone I shared it with, except my family who knew me as a kid and were part of the process too or other autistic fellows.  Not surprisingly the strongest comments were made by doctors who told me things like "there is no way you could be autistic" or "everyone has quirks" they said. This meant that even receiving a diagnosis, I was caught up in a vicious cycle that prevented me from accepting or acknowledging who I am as well as seeking any formal support.  

Can I blame them though? I don’t think so. Based on my knowledge prior to the diagnosis, I wasn’t autistic according to my own knowledge database too. As a toddler I achieved all my developmental milestones, in fact, I was quicker to achieve them. There was no speech delay. I wasn’t fussy at all. I did well at school, I didn’t have rituals or repetitive behaviours (at least not obvious ones).  But yet had someone asked in detail, like they do in assessments, they would have then learnt a few interesting details. 

I didn’t crawl but started walking. When I started speaking it went from single syllables to three-word sentences. I copied behaviours of adults (which my family perceived as being too sensible for my age and proudly quoted examples). I copied accents, sounds, phrases and movements too, both of humans and sometimes animals (not going to go into that in detail) but just for the sake of reference my "show" was the peacock dance (we had two peacocks). 

You would also have learnt that I was "too patient" with pain "too calm" in situations children panic in and got injured a lot and that I was "too well mannered", "too clumsy" and liked to hide in dark spaces when upset. 

I always embraced the compliments too even though I did realize they weren’t "true".  Who doesn’t enjoy being praised? Yet, this gave rise to a lot of residual guilt that is still hard to get rid of. I had my own restrictive and repetitive behaviours that I did not realize until someone asked the right questions.

I could feel pain, anxiety, anger, fear but not understand, quantify, process and express it properly. I did not know if it was "ok" to do it, and if yes, how.  I was more expressive about an itch than a wound because I had seen my younger brother do it when he had a long-lasting rash. In short, I constantly needed references. And since "anger" anyone showed during a conflict was "bad" I expressed it by hiding under the bed, in the trunks, cupboards or climbing my favourite tree and sitting on the top, distracting myself by thinking about all escape routes in case there was an invasion and I needed to take everyone in a safe place.

The person I used to be angry at, usually my younger brother, or elder cousin was included in the rescue plan too, but I would purposefully give them the "hottest hiding" space, in my head as a means of my revenge. Because I hated heat and light and considered it almost reciprocal to torture. 

When my nana passed away and my dad went abroad almost within the same time frame that was the most turbulent time for me, had I ever narrated my story before I would have started from there. In my head that, and the events that followed was the reason how I was. 

But the truth is the only person who I thought could "get me" was my nana and I spent most of my time with her. “Be ji” I called her. I trusted her and everything she said was taken down as mental notes I would always follow. And even though I have written this before and tried to voice it many times but have still not properly cried or grieved for her, or been able to find an expression for the void her absence left. 

Continued in part 2 >>