Things I wish people knew about my brain

This week has been a really, really tough one for me. In short, breakups suck, not getting the job you wanted sucks, and the two don’t really improve each other when they happen on the same day, combined with ongoing mental health stuff. However, in the course of everything that happened, I’ve been forced to look a lot at how people see me, and in particular, the things they don’t seem to get about me as a person with high-functioning autism (HFA). There seem to be some fundamental things that surprise people when I tell them, even people who know me really, really well. So, here’s a (edit: not so) wee list I’ve composed of things I wish people knew about me, and possibly about HFA more generally. It’s by no means exhaustive,  completely based on my personal experience, and isn’t really very scientific, so might be a bit fluffy around the edges. Here goes…

1. I am always acting

This is one of the biggest things for me when I’m in public. Whatever I’m doing, wherever I’m doing it, I am essentially acting. While I can do some bits of my social life instinctively, it takes me a long time to feel like I fit in a group, and to some extent, I’m always calculating how best to do something, say something, what to say, when to say it, who to talk to, whether I offer to buy a drink or not, and a billion other things. To an extent, of course, everyone is acting, because we have our public and private selves as a basic feature of human nature. I would argue, though, that this effect is heightened for me, because I simply don’t trust my instincts. Further explanation comes in the second point…

2. Social situations are learnt by rote

Being able to ‘skim read’ a social situation is a great thing, but not something of which I am capable in the least. For me, I have to read in detail everything that’s in front of me. There is so much social subterfuge about What One Does, what is acceptable when certain people do it, how “in” you have to be before it’s acceptable to do or say something, what comments are and aren’t ok to make. I can imagine a thousand reasons why I’m seeing what I’m seeing, or about why I’m picking up a certain feeling from someone, and I have no way of separating out which reason is most likely, not to mention what I should do with it (if anything).

The problem with all these questions is that they seem generally irrelevant in the end. I can worry all I like about what conversations are and aren’t ok for the day, place, time, company, or general alcohol level, but people often don’t see it except sometimes when I get a bit anxious. The cause of the anxiety, though, is generally rooted in a massive fear of Getting It Wrong, and being somehow punished or ostracised for it. I can’t ‘skim-read’ social situations, which makes being around strangers or going into a new situation really absolutely terrifying and utterly exhausting. On the other hand, I know that things like climbing, sessions, gigs, and parties are something I want to do, in essence, so it’s a plunge worth taking. It doesn’t mean that it’s not hard, though.

3. I can’t lie, and I’m less rude than I look

I genuinely can’t lie. Not seriously, anyway — a white lie here and there, or an economical approach to the truth on a particular point have been known to happen, but it took me a very long time to get there. If I am thinking something, I can’s easily hide it, particularly if I’m asked a direct question. This inevitably causes problems sometimes. People are frequently disarmed by total honesty, which I find really sad. I remember trying to lie when I was younger, and it just got heavier and heavier until I had to come clean, because I couldn’t keep it up. My approach is now an absolutely honest one, and I’m starting to allow myself to do it while also making sure I don’t end up being really rude. I know I look rude sometimes, or I catch people off balance with a comment or a question. For me, this is one of the biggest concerns I have about the entire social thing: that people will judge me by a standard that doesn’t rely on my honesty and my genuine desire to act in good faith at all times. I am honest, and I can’t really be another way without a serious amount of effort, which I’ve never found to be worth it. I know I get it wrong, sometimes, and it hurts people if I’m too blunt. The point is I never want people to be hurt by what I say, or offended, and it’s one of my greatest fears that it will happen without me knowing.

4. Getting my diagnosis allowed me to be myself, and questioning my need for a diagnosis is rude and hurtful

Diagnosis was a weird process for me (and the subject of a drafted blog post currently sitting about waiting to be finished). I was 21, had just had a complete mental breakdown that took me out of University for a year, and was (although I didn’t realise at the time) in the death throes of an abusive engagement that was going to end soon. The diagnosis was, in many ways, the easiest thing on my plate at the time, because it gave me a way forward with my brain and my life that meant I could really be me. I didn’t need to apologise for all the things that made me different from people. It took 15 years of questioning from my Mum and me to get anyone to listen. It took just over two months for the right person to listen, send me on to more of the right people, and for the letter to come through the door from the clinic confirming that I am, indeed, autistic. After the boiling, hellfire anger at having not been listened to for so long, and the immense sense of vindication at Having Been Right, I managed to pick myself up, and start be who I truly am.

For people who don’t get why it’s such a massive deal, my Mum described it this way. Imagine you are wearing a blue t-shirt in a room of people wearing red t-shirts. The colour difference isn’t the end of the world, and you’re quite happy with your blue t-shirt, but everyone around you is telling you it’s red. After a while, you give up arguing, you assume you must be wrong, that in fact you too are wearing a red t-shirt. Then someone comes along and tells you that you are wearing a blue t-shirt, and that it’s totally ok to be doing so. Confused? You probably would be.

Except this is way more than a matter of sartorial colour-blindness. Being denied the way I felt, the way I didn’t fit in anywhere, my suspicions of a reason that would have helped me rationalise how best to live was a massive deal, and took me to some seriously dark mental places that I won’t discuss here. I have been told by people not to cling on to my label, that autism is just a construct, that we’re all on a spectrum somewhere, that so-and-so doesn’t like parties or eye contact and they’re not autistic. Frankly, I don’t give a crap. I remember a conversation over a dinner last year with someone my own age, where they simply didn’t get the need to work out how my brain works, to the point where I was really upset and offended. Admittedly, there was more wine flowing than was conducive to having this conversation sensibly, but I felt utterly invalidated for a long while because I felt I was being told that my need to work out my brain and how to fit in my own skin was unnecessary, a construct, and basically not real.

Diagnosis brought relief, for me. Relief that I was able to wear my own skin, not the one the world had put me in already. Relief that there were other people like me, who knew they were like me, and could talk about it. Relief that I didn’t have to fit, that I didn’t have to conform to a standard that wasn’t built for my brain, that I could be me and could explain myself a bit. Naturally, there are issues around conformity, the need for it, and the need to explain one’s self, but for me, my diagnosis hits those boxes and allows me to be me. It’s not a part of my brain. It is my brain. It’s how I work, how I’m built, how I’m wired, how I am.

Now I’m worried that I’ve totally overdone this, that I’ve explained too much and have made myself look alien to the world. In truth, I am a bit of an alien, because the world isn’t built for people like us, people who don’t fit in whatever way. It’s a bit rubbish, but I still have to live, and work, and play, have my life and share it with the people around me. I just think that if people understood a little more of what is and isn’t going on, it would be easier for everyone. If you allow people to work on their own terms, whether that be gender, race, neurodiversity, height, musical talent, physical ability, whatever, the world gets easier to live in. Just because you don’t see what’s going on to make me different doesn’t mean it isn’t happening, and it certainly doesn’t make it invalid.

Hopefully the next post will be a little less heavy, but if you’ve made it to the end of this one, thanks a million. I’m not saying everyone has to change around autism. I’m hoping that a little more understanding going around will just help things go a bit smoother :)

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4 thoughts on “Things I wish people knew about my brain

  1. Articulate, well written and nothing wrong with being honest!

    You’re right, a lot of people in all parts of life don’t deal well with simple honesty – it’s something everyone thinks they want until someone tells them something they’re don’t want to hear or don’t agree with!

    Glad you’ve got the answers you needed. Never change your approach to life and continue to be who you are – each day you’ll find a reason to smile, even if it’s just small, and it’s those reasons which build up to true happiness :)

  2. Pingback: Being Diagnosed with Autism | C. E. Queripel

  3. I really treasure writings such as this, You sound like my son, 22, also HFA. I spent so long willing myself to really understand how his brain worked, I even thought I did, but I had no clue. It is only by him truly disclosing all his fears,anxieties and, as you say , how he acts each day in order to fit in, have I come close to getting it. I felt it was like looking in a mirror at him, I wasn`t able to get in the mirror and see it from his perspective. He finds life so tiring, and needs to be his authentic self as much as possible to recover. People need to be made aware of this to be enabled to relate..

    • Thanks for this, I’m really glad it’s helped! :) My mum has the same problem with me and my brother, but it’s weird trying to make two different kinds of brains talk to each other on that level. I agree, there’s a whole other thread of humanity that people don’t really get (many, in fact, but that’s for the rest of the internet!) – I just want people to know that just because sometimes us HFA folks aren’t so demonstrative about how we feel, it doesn’t mean we aren’t feeling it, or that it doesn’t need describing. It just takes that little bit more. Good luck to both you and your son, and I hope it gets a bit easier :)

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