The subjective experience of being autistic

Awkward. Introvert. Not good with people. Weird. In my own world. Obsessed. Difficult. Naive. Unable to read the mood. Too serious.

Those were just some of the adjectives and descriptions that have been thrown towards my direction - and mostly I felt were unjustified. I was just doing my own thing, not really wanting any trouble, so why I was getting these unsolicited and hostile remarks…?

Out of all the descriptors, there was one that no one had suggested, and it was one that made everything fell into place: autistic.

The first occasion that really planted the seed was when my current research supervisor point-blank asked if I have some sort of condition, pointing out to my noticeable bad social skill, difficulty in following instructions, and my employment history (I was only in working life for a few short years, with noticeable long gaps when I was stuck doing my previous postgraduate research). 

This was back in early 2020, and with the months of lockdown that followed, I would be too preoccupied with the uncertainty of the whole situation that I didn’t really think too much about that meeting. I know that I’m not the best at maintaining social relationship, but it wasn’t as if I didn’t know that already. 

Fast forward to early 2021, and I am enrolled in an elective postgraduate course, which covered the topic of presentation skills. I chose to talk on the topic of self published book, and the lecturer made the comment that I was obviously very interested in the topic, but I had a bit oddity of using words and vocabs that are decidedly unusual in a more casual presentation (it was supposed to be a sort of presentation to talk about ourselves, and I took the presentation into a more informative kind of way),  in addition to my body language which could use some improvement. 

That is perhaps the first time anyone had given a rather detailed feedback on what was it about my actions which others found odd. And that really gotten me to think of the previous meeting with my supervisor, which then got me thinking of all those other incidents where people had commented that their first impression of me was that I was odd.

When I start to weight in all those remarks, it was obvious that whatever it was that I was doing was noticeable enough to warrant those occasional comments. 

Perhaps it was all that thinking, coupled with the second round of lockdown, but I was gripped with the feeling that there really was something wrong with me. On certain days, I would wake up, feeling frustrated that things were not going well the day before, and my mind would go back to all the instances when I was called out - or felt - that I was a weirdo. Someone that would struggle to fit in, despite his best effort. 

Was I ever going to figure out exactly what is wrong with me?

And it was during that period, that I saw a recent upload from Youtube:

I was wary over what seems like a clickbait title at first (I have been following Kyle Hill, and he does approach the topic presented in his videos with a good serving of humour), but it ended up being a really honest and vulnerable ‘coming out’ talk about a topic which I have otherwise not even bother to look up. 

At that point, my idea of autism are people who you can see they talked and acted in such an obviously off-way, that you-know-it-when-you-see-it. Sure, I do think Kyle can appear awkward at times, but I had never considered him to be autistic - despite him making the comments that it might have been obvious to those who were following him. 

I guess I should do some researching? After all, some of his experience sounds very similar to what I’ve been going through…

After watching the video, I started with the suggested organization in the video, and went further to read up on the various related topics to autism. I found out that while they were not to be taken as a definitive replacement for a formal diagnosis by professional, online tests are valid ways to at least see if there was any need for a further diagnosis. 

I started with the widely used AQ test:

Uhhh okay, I was expecting at most somewhere in the borderline range. 

Let’s look at a couple more test results:

Huh.

(a bit of side note: it was interesting to find out that the journal paper for the AQ test was co-authored by one Simon Baron-Cohen, who is indeed related to the comedian Sacha Baron-Cohen (they’re cousins))

Predictably, I initially broken out the news of the potential that I was indeed autistic with a couple of close friends, who either had experience with ones with the condition, or those who are in similar position where they were suspected/diagnosed with autism. 

A friend recommended reading three chapters off the manga Shrink ~Psychiatrist Yowai~, which covered the topic of autism - it’s one piece of media I would certainly recommend it if one wanted to have a good starting point before jumping further into the topic:

It took a lot of deliberation, but I eventually broke out the news to my family. I was not really expecting them to wholly support the idea - maybe even outright hostile to the suggestion - but I figured that it was at least in all’s best interest to mention that this was an issue that I’m going through, that I’m doing the best moving forward with this understanding, and that at the very least I would appreciate if others were to understand the underlying cause for some of my actions that are odd at best or unreasonable at worst. 

It went much better than what I expected. Of course there were initial doubts and confusions on just where I was coming from, and later wariness if I want were to fall into using it as an excuse for my behaviour - but we agreed that on hindsight, it would explain some things such as how I tend to be picked out by others when I was in school, why I went through several period of intense interest in subjects growing up (some I still held on to!), and why I can get unreasonably pissed off when I’m disturbed during my total-engrossed/focused moments. Everyone was aware of how awkward and odd I am, so an autism label is not really something that is too far off from those other labels, I suppose.

I know of the obvious question that might follow: no, we didn’t think there is any need to pursue a formal diagnosis, since at this point, having a formal diagnosis would be more for peace of mind for myself, to have it being validated by an expert. It wasn’t as if I was thinking of getting a formal paper to apply for some sort of is special ability clause or anything, so it seemed hardly necessary to pour resources into pursuing a formal diagnosis? 

Ah, but what if I do end up going for a formal diagnosis, and it came out that I did not have autism?

Well, this is certainly something that I do keep thinking every now and then… And I know, there are already chorus of ‘we are all on the spectrum somewhere’ and ‘everyone just wants a label to fit in’, or ‘everyone is diagnosing themselves with some sort of mental disorder these days’.

Would a formal diagnosis just makes it easier to single me out? 

I know that there is a strong need to feel like one belong to a particular group, and how some seems to latch on to autism as their whole identity… which inevitably leads to those who are more cynical to wonder if one would latch on the identity as some sort of get-out-of-jail-card for them acting all terrible and obnoxious to others. 

But, while it does feel that labelling can be harmful when you use it primarily to base your identity on, I do believe that it is immensely helpful when it comes to those who seek to understand how to live with the condition. 

To borrow one example from one Facebook live I had  came across on the topic of autism, similar to clothes, labels could tell you on ways to take better care of yourself, when you are aware on the overall features of your condition - what are harmful for you, how you can deal with those situation, how to keep yourself in good condition.

Still. I would have to be honest that it does not get any easier, even with my understanding of my condition. Even with the awareness of what makes me tick, I still experience frustration and anger when I encounter things outside my comfortable routine. I still get anxiety having to deal with people, and I would sometime realize how I must’ve appear uninterested or rude or inattentive when interacting with others. 

And yes, I do get a few comments that more or less amount to “you don’t look autistic to me”.  

But what can I say? 

I get very upset at people who still crack jokes at the expense of autistic people. The ones who seems to be dismissive of those who does not get formal diagnosis (or, hell, even those who are formally diagnosed. I understand, that, yes, maybe in their mind, they hope that with the diagnosis, there would be a sort of ‘cure’, or at least some sort of therapy to ‘get better’… Or maybe they just can’t stand those who are open about their condition, and does not seem to possess self awareness that their actions are making others uncomfortable. 

Why? Is the issue really on attaching identity to the condition? Or is it being annoyed at the ‘disability card’? Or maybe even altogether rejecting those that does not fall into their image on what autism is?

But what can I say? 

I really struggled to write this. 

I know that, without an official diagnosis, all that I have said could just be dismissed as me overthinking it, that there wasn’t really anything wrong with me… 

But then again, even those who’re officially diagnosed gets ridiculed and doubted - not to mention doubting that they were actually autistic in the first place! - so I figured that my primary angle in approaching this writing is not to convince anyone that I am indeed autistic, by trying to present an objective view of my condition.

I recognize that just as with many others who are autistic, our experiences are rather subjective - there isn’t, say, any concrete physical manifestation of the condition that one can assign to autism, similar to, say, diabetes  - but that does not make our struggles with our condition not real. 

In light of my initial discovery, I’ve become more receptive to those who are open about their diagnosis. It is reassuring to know how it was not uncommon for adults who receive their diagnosis much later in life - with a lot of acceptance and support for many who did not pursue a formal diagnosis - on how far they’ve went through in life feeling that something was off, without considering the fact that they might be autistic. It does seem that the the feeling of being the ‘other’ is a common talking point of an autistic experience. 

Still, we try our best to live with our condition. As it has been pointed out by Kyle Hill in his video, we can’t expect the world to change for us. And that is why I think it would be a disservice to treat those of us with such condition as if we’re incapable of taking care of ourselves - we certainly would appreciate some support and understanding, but we’re far from kids who ‘can’t help it’. 

With April being Autism Acceptance Month, I think it’s a good time to reflect on all that have happened up ‘til now. I know that I must first and foremost accept that, despite what others feel about whether I am autistic or not - despite what I myself think on the ‘severity’ of my condition - I know that the diagnosis is the best descriptor in explaining my neurology. And as much as I don't really like the idea of attaching label to myself, whether I like it or not, it is the fact that these things are what make me who I am.