So I guess I’m moving to a social theme this week by talking about autism and my experience with it. I’ve been focusing on lgbt for a while now.
So, disclaimer here, I’ve never actually been clinically tested for autism. I tried last year but my GP is an asshole and refused to refer me. I actually saw a different doctor who asked me some questions and decided to go ahead and try and refer me, but nothing came out of that. She did tell me though that it would be really difficult, given that I’m an adult.
So all the evidence I’ve gotten to point me towards autism is the symptoms that I have noticed which I’ll talk about in a bit, and the sort of unofficial diagnosis I got from my counsellor/therapist (I guess I should call her a therapist and it was therapy I was doing apparently). She suspected at first that I probably just touch the autism spectrum, but then she told me to read about Pathological Demand Avoidance syndrome which is a type of autism because she suspected that’s what I have, and I guess that did describe me well to some degree.
So about my symptoms:
I think the most obvious one is my problems with socialising. I can socialise to some degree I guess. Small talk is a lot easier now than it was a few years ago. I do tend to get jokes and sarcasm, they only escape me sometimes which was part of why I wasn’t convinced at first I was autistic. My social problems were mostly about forming and keeping relationships. I still find it extremely hard to make friends. I hate situations where I have to meet new people. I used to have quite bad social anxiety. I believe that stemmed from not knowing what to do and being judged for it. It was also because I was very much ashamed with myself- it was very embarrassing. Especially when all your relatives are very social people (I guess that’s a black thing) and they expect the same from you.
I’ve heard a lot of autistic people often make social errors and cross boundries. I hardly did that (other than not talking when you’re supposed to) because I was too scared to mess up. I set up very strict social rules, rules that I still adhere to, to stop myself from fucking up. And I guess it worked most of the time. It’s scary to stray from those rules, but sticking to them prevents me from progressing in any relationship and I lose friends very easily. A lot of the time I never get to friend status with people I like (in a platonic way, I mean). That’s why when I met up for coffee with Mochi, it was kind of a big deal for me. But it’ll be an even bigger deal if I initiate it myself which I’m not sure I’m ready to do. I mean, I still have trouble messaging people. I’m just so scared of crossing that boundary and becoming a pest.
Interacting with classmates has also been really hard. I used to think I got along pretty well in primary school (on the socialising part), but then I realised that I only had I person who I hung out with for the first 7 years I was there (Cloud) and when she wasn’t around, I would mope around in the playground alone. I was the same in secondary school… And in sixth form… And in university to be honest. I all those cases I only had one friend who I hung out with, and if they weren’t there- I’d be on my own. I guess maybe it’s a little different in uni. I sort of belong to a friendship group (somehow). I don’t know how things will go next year though; we have to switch groups and all the people in my friendship group were in my group or the group that our group normal works with. It actually kinda sucks to change groups- I actually liked and got along well with a lot of people in my group to the point where I started to feel comfortable around them and sometimes I’d talk to them.
I used to have a lot of trouble with relatives too. It’s gotten a bit better though. My social anxiety subsiding has allowed me to be a little more expressive. I also used to hole myself up in my room when we had people over (which I guess I still do to some point) and my dad used to tell me off for that and told me to socialise with my cousins like my sister. I think back then it wasn’t so much the social anxiety that was the problem- it was just about generally finding it hard to socialise. I can’t really pinpoint the problem because how am I supposed to know about something I lacked, but I just found it hard to talk to them. My sister was also a lot more invested in their lives whereas I didn’t really care as much (I was always in my own world and am only really now taking my first steps out of the bubble). At some point I tried putting a lot of effort into it. It was exhausting because none of this came naturally to me and I’d just want to lock myself in my room for a whole day. And let me use this golden opportunity to talk about how taxing socialising is for autistics. I remember during freshers week last year, I broke down and cried so many times. It was waaaay too much for me to handle and I was living out so I had to be social at ‘home’ too! I was putting so much energy into thinking of what to say, monitoring people’s reactions and responding accordingly. And making eye contact. Ohhh the dreaded eye contact. I don’t know how it is for other autistics, but making eye contact is like getting stabbed. I was very embarrassed when my therapist pointed this out. Well, uni was a drastic change and clearly I wasn’t taking it that well. Like the fool I am, I didn’t even realise that until I broke down crying the first time.
So that’s socialising for me. TL;DR: Relationships are super hard for me. I’m clueless when it comes to them.
Another symptom I have is the repetitive actions. I don’t really tend to pay much attention to this one and I’ll explain why later. So autistic people tend to do this thing called stimming, where you do something repetitively to indulge one of your senses for whatever reason. It could be to calm down. It could be a way to express an emotion, whatever. The most famous example is flapping which, if I’m being honest, I have done a few times. I tend to find myself stimming sometimes now-a-days. It’s usually knocking, clapping or tapping parts of my face. I used to have this one weird stim where I’d tap my nose and then point my finger outwards. I haven’t done that in a while, but it’s weird and I no idea why I did that. One of my favourite comforting stim is to touch my ears. I do it reflexively. It just happens. Of course, non-autistic people stim too, only autistic people to it a lot more and often have more obscure stims.
My lack of emotional control is a big prominent symptom that I can remember far back into my childhood. I tended to be quite aggressive, argumentative, and I could go from zero to one hundred in a second. At one point I even went to art therapy. Not entirely sure of the reason- but I’m sure it was related to that and my inability to get along with the other kids. At that time I never realised I was actually quite a bad kid and a problem kid as well. I always thought I was an angel because I never disrupted the class (unless some kid made me angry), I was never rude to teachers and I always did my work to the best of my ability. People just didn’t get me, and I guess I didn’t get them either.
Of course that was all in primary school. I got a lot quieter in secondary school, probably because of all the hate I got in primary. That doesn’t mean I stopped being an angry argumentative and aggressive person- I just tried to hide it more. It was hard, though. Sometimes I just… explode! It happens a lot more at home now, probably because I’ve started internalising things. It’s really horrible when I do explode. I’ve once described it as being trapped inside myself, watching my body freak out. Or maybe I should describe it as my mind splitting in half. One side takes goes insane and the other side just sits back and watches calmly, telling the other half that this is all irrational and that it should just stop before it makes things worse. I’ve once called this an autistic meltdown. It probably is. They tend to look like tantrums, but really it’s just me freaking out because I have a have a low tolerance for emotions. That’s mostly why I stim.
A lot of autistic people complain about sensory issues. This is something that I’m not entirely sure about. I used to think that I have an auditory processing disorder because I often couldn’t pick up speech, despite being able to hear. Of course I didn’t realise that hearing mechanisms are a lot more complicated than that so you can actually be deaf to certain frequencies only. I actually went to get my ears checked and before any testing could begin, they told me my ears are just blocked with wax. So I went to get the wax removed only for the nurse to tell me that my ear is not blocked. So… yeah, not really sure what to make of that…
I don’t think I have sensory issues. Or at least not with hearing and seeing and all the other types. The only one I do suspect is tactile sensory issues because I do actually meet the requirements, but at the same time wouldn’t my skin be naturally sensitive due to my extremely high IgE levels (about 130,000) which lead me to be highly atopic (basically sensitive to everything in an allergic sense). My skin is extremely sensitive (not just in the allergic sense) when I have rashes, but it’s also quite sensitive when I don’t. One thing I never noticed that my parents pointed out to me is that anytime someone moves to touch me, I jerk away from them. This really surprised me. I can only wonder why I never noticed something like that. I did start noticing it after a while. Don’t get me wrong, I don’t mind hugging and heavy touches like that. I just avoid light touches and touches I don’t expect.
There are some conditions that autistic people tend to get that I have quite a few of. They’re the most obvious ones like anxiety and other developmental issues- such as my ADD symptoms. I won’t go so far as to say I have ADD though. I probably have these symptoms because autism and ADD do have a lot of similarities. A weird comorbidity I have is IBS which can be quite common among autistics. I have a feeling, though, that it may be related to my hypersensitivity though. The final one which I think is directly related to my autism is my prosopagnosia. This is a disorder where it is very difficult to recognise faces sometimes. It is very apparent to me that I have this, because it has caused me lots of problems and embarrassment. I have a hunch that it’s because of my desire to avoid eye contact and the fact that often, I am in a world of my own. If you pair that with my selective memory, would explain why this happens. Once, Mochi had a hair cut (I keep mentioning him in this post…) and although his hair was only a little shorter, I had trouble recognising him. I also have trouble with family members and family friends. It’s a real pain and doesn’t make making friends any easier.
Now as I was starting to learn more about autism, I found myself heavily involved with the autistic community online. You could say that autism was one of my ‘special interests’ (The stuff that autistic people tend to obsess over). It was partly for the community. I needed to talk to people who really understood me and what I was going through. I needed to laugh and my social shortcomings and joke about them with other people. And I was desperate to make some autistic friends (which I guess I tried but I kinda chickened out). The other part of it was to get validated by other autistics. For them to show me that I’m not just a special snowflake- that I’m not making it up to feel special. I wanted a reason for all the social shortcomings and I had been searching for years. I’ve had so many tear-stained, sleepless nights hating myself and wondering why I can’t be like anyone else. To know that it wasn’t my fault and that I just had a disorder was a breath of fresh air.
But eventually I withdrew from the community. It was about the time I stopped calling myself asexual and non-binary. I was distancing myself from anything SJW-y and the autistic community is full to the brim with SJWs. They were all really nice to me though, but it was a bit to much and my autism was starting to feel like some dumb label I attached to myself. That I’m appropriating the label ‘autistic’. It no longer matter whether actually autistic people confirmed what I was experiencing was autism. The autistic community felt like one big circle-jerk. I began getting sceptical of my stims. Was I just putting them on just to validate myself?
So I stopped thinking about autism and distanced myself from it. It was too much guilt to handle. I stopped using the label autistic. I just said ‘socially inept’ because all I knew for sure was that I clearly had pervasive social issues since a young age and my therapist had confirmed that I didn’t pick up the social skills other people my age (and even younger than me TT.TT) had. It was also clear to me that social anxiety was not the main issue anymore. I don’t even know if I can say I have it anymore.
I once again because the socially awkward loser who doesn’t have interest in others instead of the mildly* autistic person stuck in their autistic bubble wanting to be able to relate with others (and is trying their best!)
But then today (the day I’m writing this, I mean) I ended up watching a few autism videos, feeling guilty as I did so, until I came across this one dude who, for once, was just like me (apart from his crazy mad memory skills) and suddenly I was starting to accept the label again. So I’ll use it now.
And it’s fine to say so. It may be a ‘mild’, or ‘high functioning’ form, but it’s still autism. And I guess me accepting it is me deciding to throw away that guilt once and for all. I mean, there are other autistic people who fair better than me. Autistic girls often get by by mimicking their classmates- something I’ve never been able to do. Their disability has been hidden, where as parts of mine have been extremely apparent to the fact where schools have intervened multiple times, but have never been able to identify the issue (well aside when I had therapy in sixth form- my form tutor had referred me, which I’m grateful for.)
So yeah, that’s the end of this post.
It was hard to type and I’ve actually just been sitting for hours. Actually another autistic characteristic is to be bad with time and to stay doing the same thing for HOURS and, a lot of the time, find it hard to stop!
I can’t tell you how much that applies to me XD
Thanks for reading this far- you. are. awesome.
I’m gonna go and eat something before I starve.
[* Yeah, I know I said ‘mild’ and any Capital A Autistic (basically an activist) will tell you that that’s politically incorrect, as well as using functional labels. Support labels (e.g. high functioning = low support autistic) are generally more accepted in the autistic community so you can use those if you want to be PC. I don’t think there’s anything wrong with trying to be PC yourself. I only feel it’s a problem when you force it on others so I won’t tell you which to use. As long as you’re a decent person, I don’t mind that much. The reason I used mild is to emphasise the little impact (but impact nonetheless) autism has on my functioning as an adult. I also used it because I’m sure some autistics and most non-autistic (or ‘allistic’) people would be familiar with this categorisation.]
Also, PS: I think I’ll make a post about PDA. I realised I never really elaborated on that and why my therapist suspected I had it so I’ll do that next time or whenever I can.