An Outsider’s Inside story - part 3 of 3
23 March, 2022
Unfortunately for as long as I can remember I was that adult for almost everyone around me, so they had no doubts that I could possibly need help with that.
I consistently had a specific set of friends I can still count on my fingertips. Up until grade five, two boys, from grade 5 to O-levels one best friend, a group of friends in O-levels, none later except a teacher / mentor and two juniors and then a group of four that increased to six throughout college and foundation years. I am still in touch with most if not all of them. And turn to them when I need to ask something about myself, I am not very sure of.
My view of the world was very restricted in terms of what I knew about myself and how the world works. Almost as if living in a paradox I could not make sense of. I knew I was not a bad person based on my own definitions, yet I struggled to accept myself for who I am. I knew my worth, I knew what I brought to the table exactly, yet I wondered if it is enough because it never seemed to be enough to fit in.
I had clear goals, yet I judged them based on the standards set by society and disapproved of them on my own before anyone else could. I was clear about my likes and dislikes yet made efforts to adapt even when I did not have to because I felt that was the right thing to do. I lied to hide my feelings, Yet truthfully and consistently expressed emotions like love and appreciation I strongly felt. I was confident and eloquent and wrote novels in terms of explanatory paragraphs. Yet struggled with conveying what I mean or deciphering what and where to say and what to withhold.
Socially I attended weddings, parties and made plans for get-togethers. Yet I used to be asked why I am “sad” in the midst of those and had no reason. Despite being the “star child”, and saving those around me from potential situations that could cause problems, The amount of times I have been in trouble with the authority figures unnecessarily because of my “suspicious attitude” whilst I was on my own is simply hilarious. From being stopped at immigration to being stopped for “stealing” things I had paid for, despite having the receipts. I have seen it all. Gotten out of those too, because well every time they eventually did find out the truth even if I was too frozen to say it at the right moments. But every time in those moments I felt utterly helpless. Like in those dreams where you are screaming but the words don’t get out.
The only gatherings that included people other than my friends that I have genuinely enjoyed to date were concerts. I have loved music for as long as I can remember, and I felt that when my favourite songs played, I wasn’t thinking about anything else just focusing on both the melody and the lyrics. And the people who I’d be scared of, moments before and after, suddenly became “part of my gang” as they sang along.
Everything I have said above is true for many of the other autists I have met, who are “high-functioning” or to put it in a better way good at masking. Unfortunately many are not as lucky as I am and end up losing jobs, families, and sometimes lives based on views of how “autism looks like”. It is called Spectrum for a reason, that too a radial one, not a linear one with multiple presentations and spiky profiles. Many have associated physical health conditions, which have proven associations with ASC according to scientific data but are regularly dismissed when looked at as individual problems. They could be as serious as atypical heart conditions, undiagnosed immune conditions, dysautonomia, connective tissue disorders and “rare” genetic syndromes.
I hope by now you have gotten an idea of why autism isn’t and shouldn’t be seen as a 'quirk' and why we need more awareness. So I will just come to the end by telling you about what difference can a diagnosis make if autism is just a difference that can not and should not be changed?
The simple answer is that it changes nothing but still changes everything. I am still the same person I used to be, with the very same lifestyle and habits. But what changed is that after what felt like eternity, I finally have accepted myself and am happy with who I am. I am not actively trying to 'fix' myself because I now know there is nothing innately wrong or broken.
Little modifications like using headphones when I have to use public transport means that I don’t panic or forget where I have to get off or check my phone every 30 seconds to make sure. It means that I don’t have to give myself pep talks to try and face the cashiers at counters which have always caused me massive anxiety and have resulted in me panicking and leaving stuff behind. I simply use the self-service or order online. I have learnt to take care of myself too, by realizing It is not uncommon for autists to “forget” basic stuff and not understand or confuse emotions like hunger. So I take extra care to remember to eat. I have also started to learn how to use certain traits as a “blessing”. E.g. perseverance, hyperfocus and not taking things personally. Most importantly not understanding criticism covered in sarcasm coming from people I don’t know, has been nothing short of bliss.
This doesn’t imply that I have turned into a narcissist and accepted myself as perfect. I am far from that. I am open to learning and changing things about myself that need to be changed. I am open to new possibilities. I am not a hero or a villain. I am not the oppressor or the victim. I am just an average human who wants to be allowed to be her authentic self without being judged or advised to change if being myself is not causing any disruption. I might not even have asked for that favour, but for me now it is a matter of “equality” because I have seen people be openly and proudly rude to others, be mean, deceitful, snobbish and much more. I have tried hard not to judge them because I wasn’t in their shoes but I can now confidently ask that if people can be all that “openly” what is so wrong or embarrassing about being autistic?
In a nutshell, like everyone I have had my share of both good and not so great bits in life. But one thing I want everyone, especially the medical community, to understand is that just because we can not see or make sense of something does not imply it is not there.
Sadly many of us have or still practice it if we do not find out the signs, symptoms and diagnostic parameters in line with our differentials. It is quite possible that we are not looking for the right signs/symptoms or not asking the right questions. Simon Sinek said, “the eye doesn’t see what the mind doesn’t know”.
The purpose of sharing this personal journey is the hope that you may start seeing, people, friends, colleagues, clients and patients differently. Medicine is full of exceptions, especially when it comes to the human brain. Even after years of research, there is very little, we know about so many aspects which make both neurology and psychiatry one of the most interesting and curiosity sparking fields. But unless we are open to learning new things and accepting things that could be different from how we view them to be, we would not be interested to find out more, which will only halt the process of discovery and learning.