Alexithymia does not mean ‘no empathy’

It may sound like a barbarian princess from a high fantasy novel, but alexithymia actually means a chronic struggle to find words to fit emotions. I scored highly for it when they tested me for autism, and while the two often co-occur, you can have one without the other.

The discovery that alexithymia is a part of my personal psychological makeup didn’t come as much of a surprise. I have sat there, intensely feeling ‘some sort of way’ and immobilised by my inability to identify which way, more often than I could account for. Oddly, it doesn’t affect my ability to write about emotions, especially when I am writing fictional characters; this particular difficulty only seems to be present in the emotional moment.

Alexithymia has been connected with an overall lack of empathy, because of course it has. Heaven forbid that anyone should not be able to immediately label every sensation present in themselves while also being perfectly attuned with the emotional state of everyone else. To struggle with this surely means that we don’t give a shit about anyone but ourselves, right? (I hope the sarcasm is plain here.) But I’m here to say that I reject that view.

(Amusing side note – the first word suggested to me by my phone after hitting Enter at the end of that last paragraph was ‘FUCK’. Yes, in all caps. My keyboard knows me too well.)

Cognitive empathy, or knowing what the other person is feeling, is one thing. Sadists and abusers have cognitive empathy. They know their target is suffering, but they either enjoy that knowledge or are indifferent to it. But affective empathy – feeling the emotions of others – well, I am not the only alexithymic/autistic person who can say that we might not be able to state “There is an angry energy in this room” or whatever, but we have walked into places and felt that tension in the air. Many of us can attest to feeling excited when someone is happy – it’s just that excitement might look very different for us (I for one tend to confuse it with anxiety) and we might not realise at the time that we are empathising. Sometimes we might experience emotion as physical sensation, like the headache and sudden fatigue I get when I’m around someone who later turns out to be bad news – I have picked up on that vibe all right, but it’s expressing itself in a different way and I’m not able to connect the two until some time later.

And that’s the key point, really. It’s in real time that I and people like me come undone with handling, recognising and processing emotions, whether our own or someone else’s. Once we are out of the immediate situation, we will often be able to think it all through and realise what was going on there. If we’re lucky, we will be able to carry that awareness into new situations and our reaction time will improve. But often that just isn’t possible despite our best efforts, and I think it would be good if NTs/Codies could use their apparently superior empathy to understand that delay does not mean absence.

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The experience of sensory overload

The National Autistic Society has a section of their website dedicated to sensory overload, which is great because it means that this lesser-known part of being an autistic person in an allistic world is having attention paid to it. Here, I am going to talk about how sensory overload manifests itself for me personally. Hopefully some of it will be relatable to you.

1. Irritability

Hooo boy. This, for me, is one of the first signs that I am getting overwhelmed. It doesn’t always come across as outward snappishness, though – I am generally very slow to anger and more often than not, it takes the form of silently fantasising about the person’s demise because they are chewing too loudly or similar (Google misophonia – it’s a thing).

2. Increased stimming

Specifically, I start flapping my hands more. While I was being tested for autism my friend, who was there for moral support and to add his own observations to the assessment process, said that one time at a busy train station I looked like I was doing doggie paddle across the platform. Since then I have caught myself doing the same thing in other crowded places. (I also jiggle my leg, bite the inside of my lower lip, and move my toes around in time to music in my head, although these stims aren’t particularly in response to stress – they’re just what I do as part of being me.)

3. Weird dreams

I will usually get an overwhelming urge to nap, that ends up being loaded with dreams that are a mash-up of whatever I have been doing that day, unresolved people-related stuff, and signals from my body that I need to pee or whatever. I usually wake up from these sleeps feeling a bit dazed but far less strung out.

4. Sugar cravings

If I have just eaten an entire packet of biscuits in one sitting, without even bothering to make a cup of tea to go with them (why yes, I am British, how could you tell?), then yeah, I am super frazzled.

5. Listening to the same song over and over and OVER again

I am a big fan of EDM (electronic dance music), particularly techno and hardstyle. Today, while out shopping, I put my headphones on and listened to the same track on repeat for two hours. I have only recently realised that I only do this when there’s too much going on around me. Maybe the repetition is soothing or something.

6. Increased hunger, but decreased desire to eat

Meal replacement shakes (I favour Huel but there are loads of different ones) are a Godsend at these times. I love food, but sometimes the thought of chewing and swallowing is just one more thing on top of too many other things, even while my stomach feels like it’s trying to eat itself. With the combined power of modern nutritional science and a kitchen blender, I can solve both problems at once.

7. Things I enjoy feel like a chore

This can also be a depression symptom, by the way.

8. Migraines

Luckily these are rarer now that I have glasses, but now and again one will appear just to fuck up my already far too epic day.

9. Increased sex drive

TMI maybe, but I included it because maybe someone else out there experiences this same thing and has been thinking they’re the only one. I have no idea why being overloaded should lead to horniness, but it happens, and has led to some ill-advised encounters in the past.

10. Neglecting my blog

This point is partly a dig at myself because I know I missed a post again last week, and partly because a list with nine items on it rather than a tidy ten doesn’t sit well with me. I am hoping to get to a point of organisational awesomeness where I am writing and scheduling posts in advance so as to keep to a strict pattern of Monday and Friday updates. If this happens, I will have achieved more than I could ever have imagined, and I will probably write a self-help book called Organise Your Way To A Perfect Existence or something. ūüėĚ

Anyway, I hope this has been useful, amusing, or both. Thanks for reading!

Dating while autistic

Hey, readers. I’m now mostly over the illness, which turned out to be actual influenza and not, as one of my female friends jokingly suggested, Man Flu. So here’s a blog post to celebrate, only it’s not much of a celebration because I am thoroughly pissed off with my autism today.

Full disclosure time – the last attempt I made at being in a relationship ended about two months ago, when she phoned me in tears about money for something like the fifth time in as many weeks. She’s also disabled and has been for many years, but still hadn’t applied for PIP (Personal Independence Payments). For any non-British people reading this, PIP is a non-means-tested disability benefit that, when I was awarded it back in 2012, effectively doubled the amount of money I was receiving each week.

Anyway, I had advised her repeatedly to call them and get the process started, offered to help her with the application procedure including going with her to the assessment – and lent her money. And on this particular day, I lost my temper and told her to hang up on me, phone the goddamn PIP people already, and call me back when she’d done it, because I was tired of listening to the same complaints about her state of poverty when she wasn’t doing what she could to help herself out of it.

I knew I had spoken harshly and I later messaged her to apologise for being quite so blunt, to which she replied that you were supposed to get comfort from your partner. At this point the “Oh for fuck’s sake” in me rose again, since I didn’t see why I should be repeatedly comforting her for a situation that she was effectively wallowing in, and the conversation ended with me dumping her, over WhatsApp, because I wasn’t going to keep on saying sorry and the whole situation was overwhelming and I had run out of ideas for making it right between us.

Not gonna lie, I feel shitty about how I treated her that day. I know that at least part of it was because of my autism. I haven’t contacted her again since except to ask for the money she owes me (she still hasn’t paid me back), and I never will. And I can’t help thinking about the things NTs often say about us – that we lack empathy, that we’re self-centred, that we are cold and unemotional – and applying them to myself in that scenario. I can definitely see how she would have felt like I didn’t care about her distress, when in fact I was overwhelmed by it and just wanted to make it disappear. As for ending it via text message…that’s a dick move and I knew it at the time. I was at the limit of my ability to cope and took the easy way out…easy for me, I mean.

Asperger-style autism is not all quirkiness, intense interests and being good at maths or whatever. It’s a pain in the arse, especially when it comes to trying to have relationships with other humans. I can see that I had a point and that actually, she was asking a lot of me especially given that she knows I’m autistic. But I also just feel really crappy about the whole thing today, and so you get to hear all about it. You lucky things. /sarcasm

Owning my identity as a disabled person

First of all, sorry for missing my Friday post. I’ve been helping my best friend deep clean her flat this week, and I’ve not had the energy for writing on top of that. However, her place is now sparkling (I’m very good at cleaning even though I say so myself, and no, I don’t want to come and clean your place too so don’t ask ūüėĚ).

This week was what made me realise that I need to start taking painkillers on the reg – not just when I am in too much pain to function. And when I say I realised it, I actually mean that my bestie straight up told me that was what needed to happen, and that I also need to go to the doctor about the pain and the fatigue. She has fibromyalgia and has been at the stage of refusing to medicate because of feeling that she ought not to need it, so she knows what she’s talking about.

So I bought some co-codamol (paracetamol and ibuprofen really aren’t cutting it anymore) and guess what? The pain got less painful! And I kept taking them and it became manageable! What a concept! *faints dramatically* Admittedly I did miss a dose this afternoon (I was travelling and forgot) and am now lying on my bed feeling like I’ve been put through a mangle, but lesson learned, and I will call the GP tomorrow.

This new awareness has gone hand in hand with an overall increasing acceptance of the fact that my autism is a bona fide disability, not a character flaw. (Ironically, I never thought of anyone else’s autism in those terms – just my own.) I’ve started using disabled toilets and sitting in priority seating on public transport and everything.* It’s amazing, the difference these little changes have made. I am starting to feel more comfortable describing myself as disabled, and to realise that in doing so, I’m not taking anything away from other disabled people. This, in turn, means that I’m not constantly at war with myself anymore, and that can only be a good thing.

 

*It occurred to me one day that actually, public restrooms are stressful as hell, and add unneeded pressure when I am usually already in a state of sensory overwhelm from being in public in the first place. Also, priority seating is often in a quieter part of the bus or train, or at least a part nearer to the exit, which means less fighting through people in order to leave the vehicle. These are significant issues for me as an autistic person, and anything that can make being out and about easier should be embraced. This is even without factoring in the physical pain and fatigue.

Why (and how) I play Pok√©mon Go

I started playing Pok√©mon Go (hereafter referred to as PoGo) last summer, a year after its release, because one of my friends was sad about having nobody to play with. I hadn’t grown up with Pok√©mon, not having been allowed a Game Boy when I was a kid, and so the franchise as a whole was completely new to me. My friend stopped playing, but I was hooked – and still am.

Apart from all the usual benefits Рfresh air, exercise, being part of a community, blah blah et cetera РPoGo could have been made for autistic people. The repetition of catching, hatching and battling is soothing, and has enabled me to build a routine around my play sessions that is very comforting. The collecting aspect is appealing РI am always happy to add to my Pokédex, and a new gym badge always makes the day better. And since I have a fascination with place names, I like to learn the names of all the different gyms and stops Рespecially when I visit a new area.

I usually play 1-3 hours a day (any more than 3 hours and I run out of spoons, plus I will ache like hell the next day). I have a few different regular routes that I walk around, and I rotate them every few days or so Рpartly to encounter more different species of Pokémon, and partly for personal safety reasons. And when battling gyms, I try to observe the following self-imposed rules:

*If I have joined someone else in battling and they have done most of the work, I wait for them to put a Pokémon in first

*If the people in an opponent gym are mostly lower levels than me, I usually let them keep it. However if they’re mostly the same or higher, they’re fair game

*Anyone, regardless of level, is fair game if they’ve kicked me out of a gym within 10min of me taking it over

*If an opponent gym is full, I usually won’t battle it unless they’ve all been in there at least a few hours

*If a friendly gym is full of high-level Pok√©mon, that’s when I use my own big guys (Blissey, Snorlax, Rhydon and so on) as fellow defenders. If I have battled a gym on my own, I will put in something smaller and save my top ‘mons for attacking

*If I have battled a gym by myself and some sneaky sod from one of the other teams joins me at the last minute and steals it from me (ie if they break my first rule), then they are GOING DOWN. I will kick their interloping Pok√©mon out and I will NOTE that person’s username and next time I see them in a gym I WILL IGNORE MY OTHER RULES IN MY QUEST FOR VENGEANCE!!!

Ahahaha. Ahem. *deep breaths*

So anyway. PoGo is a thing I do, and I am getting into the rest of the franchise as well. The anime is fantastic (I especially love the Haunter episode from Indigo League) and I can definitely see why the video games have such a following. Next step, the trading card game? Maybe.

“But you’re so intelligent!”

Neurotypical people – please, PLEASE do not say this to anyone who discloses any kind of developmental disability, or talks about struggles with day-to-day living. I know you think it’s a compliment. But what you’re actually doing is dismissing that person’s account of their own lived experiences. (Also, intellect is a weak thing to compliment anyone on. More on that in a future post, maybe.) You’re saying that strength in one area – being brainy – automatically means that you can’t possibly have any difficulties in this world. Well, I am here to tell you that this is both factually incorrect and emotionally hurtful.

I do acknowledge that I have ‘smart privilege’. For example, I am often treated preferentially by people in authority – police, doctors, social workers etc – because I have an advanced vocabulary and can speak well when I’m not too overwhelmed to process. I know this because people who do not have these traits have told me about their experiences with institutions and the individuals who work therein, and those experiences are wildly (sometimes harrowingly) different from mine. I can complete forms and navigate application processes for things like benefits without much help. These things are my strengths. I will point out, though, that I am writing this post from my bed at 3pm because, in spite of having been awake for six hours, I haven’t yet got my shit together enough to get dressed and start my day.

My high IQ is useless for pretty much anything that isn’t an IQ test. Contrary to all expectations for me by my parents and teachers, I did not get several degrees and end up as a high-ranking professional. Instead, I flunked out of university several times and now live on disability benefits. This is because intelligence is only a small part of being successful in that specific way.

It isn’t just a matter of being able to learn stuff. You have to be able to go to classes, make and organise notes, keep to a study schedule, interact with fellow students and lecturers and course tutors…and then, later on, pass interviews, assimilate into a workplace, do ‘networking’, and a million other acts of competence, every single day. All of these things are immensely taxing to an autistic brain and nervous system. Some of us can do them (likely those with good support systems one way or another). Many of us can’t. And when we hear well-meaning Codies go on about how we ‘ought’ to have done such-and-such because we’re so clever at book-learning…it’s a metaphorical punch in the face.

I know this post is a bit negative in tone and I apologise. But this has been a pet peeve of mine for years and I just needed to rant about it.

My work history through the window of my Asperger’s diagnosis

The year was 2001. I had just left sixth form college and was in my first ‘proper’ job in a call centre. I picked up the job itself very quickly, but it was an open plan office and I could barely stand the din of everyone else talking at once. Add to that the requirement for office wear, the glare from the old style CRT monitors and fluorescent lights, and the constant faux pas (like suggesting to a customer that his direct debit might have bounced because of lack of funds, which is a valid point but not the best thing to say to someone who is already angry, as I now know), and you can possibly understand why I was always at the bottom of the performance charts. I quit nine months in, and I honestly commend myself for having made it that far.

Fast forward to 2002. I was working part time at a carvery restaurant, waiting tables mainly but also working the bar and doing kitchen duties occasionally. Without even knowing why, when it wasn’t busy I would spend ages in the bathroom, just sitting on the throne and staring into space, rocking back and forth. My colleagues must have thought I had a serious bowel issue or something.

On a surface level I was having a sit down in order to ease my aching feet, but I now realise that I was also hiding from boredom and from standing there listening helplessly to my co-workers chatting in the way I never seemed to be able to grasp. I also understand that I was exhausted by the people, the lights, the smells and the music, all stampeding over my senses unfiltered and unabating.

2003. I was now an assistant in an air traffic control tower full-time, and doing a part-time course on the side. You would think that such a technical environment would be well suited to me, but I struggled to understand the flight plans and the verbal commands of the air traffic controllers. I remember being yelled at once for not knowing what to say in response to one of the tower ATC’s requests for a takeoff clearance while I was assisting in the radar room.

“Standard North!” she snapped at me. Bewildered, I said that if she knew what I was going to say then why did she need to ask? Which did not go down well, and was even mentioned in my performance review later that year (under ‘insubordination’).

I lasted two years in that job, probably only because my dad was the boss. I was perpetually late, took huge breaks because I couldn’t bring myself to go back up to the control tower, and worst of all I did not have any idea how to communicate these difficulties to anyone.

Come 2008, I was back in the workforce again. I worked briefly in retail, had many of the same problems as I did at the restaurant, and then took a job as a street cleaner. I genuinely loved that job and would still be doing it if it wasn’t for my inexplicable (at the time) need to take days off sick because of a vague but pressing feeling of “I just can’t cope today”. They did not renew my contract after the first year.

2010 saw me working as an assistant at a company that rented out office space. It was a very ‘businessy’ environment and I just did not understand how to function in it. The interactions between my colleagues and the clientele were a whole new level of baffling. I spent most of my time hiding in the janitor’s room, and the only reason I didn’t get fired was because my then-boss gave precisely zero fucks. Once, I found myself just leaving the premises and wandering around in a daze for about three hours, and she never noticed. Or, if she did, she didn’t talk to me about it.

There are dozens of other job examples. But they all see the same problems cropping up over and over again. Strife with customers, other workers and bosses due to misunderstandings. Sensory overwhelm from the bright lights and noises. Anxiety, stress and eventual meltdown. Even my otherwise fairly successful venture as a self-employed tutor was spoiled, for a while, by a falling-out with a parent because they didn’t like the ‘tone’ of the written agreement I tried to introduce. We resolved it eventually, but my point is, most neurotypical adults manage to do basic shit like go out to work without needing to hide or having a breakdown or mortally offending people as a matter of course.

My diagnosis was in April 2017. I don’t go out to work now and I am better for it. But I wish I had been spotted as a child, like my son was. Then maybe I wouldn’t have had so many of the issues I have described, nor the concomitant mental health symptoms that resulted.