Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!

Success Fail!

I read an article the other day. Nothing spectacular, not one to which I was ever intending to pay significant attention, and not one that I sought out – it just appeared in my facebook feed and I was sufficiently intrigued to click through and see what it said.

It was entitled something like “How to be Successful”, and was a list of the things you should do in the workplace in order to achieve success and be perceived as honest, open, secure, confident, and so on. I immediately disliked the article, very very much. It was a classic example of “ableism” and discrimination against the neurodiverse, and it made me cross enough to save it to refer to so that I could write a blog post about it.

I have long known that I could never work in any sort of “business” scenario. The closest I ever got was an administration job for a business project attached to an academic institution. I lasted a month. The tears and trauma of putting on the suit every morning were substantial, and I felt my confidence seeping away day by day as I was evidently unable to do the job that I had been hired to do. At the time I thought they were simply impossible people (that may have been true), but the reality of the situation was probably that I was never going to be able to cope in such an environment. If the list below is anything to go by, then it’s now glaringly obvious why I’ve been such a failure in the world of that sort of work (obviously, this is one perspective on one type of work, in one type of environment – this is a blog post, not a thesis attempting to cover all eventualities, and only provides a snapshot of one particular aspect of success in the workplace).

I learnt from the article that to achieve this “success” I should: sit up straight, use gestures correctly, open my arms, not touch my hair, smile, make appropriate eye contact, and give firm handshakes!

Wow!

And I’m expected to do all that while wearing clothes that hurt me, and knowing by magic when to offer to make tea, and being comfortable with working as a team, possibly in an office with lots of office machinery making a lot of noise and fluorescent lighting overhead, and so on…

It’s no wonder I failed.

If I consider each of these criteria for success one by one then I come to the following conclusions about my ability to meet them.

I can sit up reasonably straight for a short period of time, but I find sitting on a chair “normally” extremely uncomfortable – given the choice I always sit with my legs folded under me, and always have. I imagine this is because the pressure is reassuring and helps balance my errant sensory system. If I have to sit on an ordinary chair in the ordinary manner for any length of time I start to feel stressed and sick. My legs will jiggle (involuntarily), and I will run out of energy very very fast.

I received my draft report from my autism assessment the other day (it will be completed after the next meeting). The assessor observed that I can use gestures, but that my range of gestures and facial expressions is much narrower than would be expected and that my gestures are formulaic and learnt. This is me, with 40 years practice and learning – and I still don’t make gestures or facial expressions like most people are able to.

I should open my arms. Like sitting on a chair, I can do that for a very limited time, but it feels forced and unnatural. My natural inclination is to draw my arms in towards me, to bend my elbows upwards, and to clasp my hands together. Sitting with arms open for any length of time feels contrived and uncomfortable, and, also, dishonest, because it feels so clearly like acting. Apparently having closed arms means I disagree with what someone is saying to me – I disagree most strongly with that assumption!

Apparently touching my hair shows a lack of attention!!! Since hair twirling is one of my biggest lifelong stims, it’s actually something that helps me to pay attention. And, moreover, it’s probably one of the more socially acceptable stims – if they don’t want me to touch my hair would they rather I played with a toy or flapped my hands? Maybe I could substitute the hair twirling for rocking and biting my fingers? I suspect that wouldn’t be acceptable either, but any of the above would actually HELP me to pay attention!

Smiling at the right time in the right place is apparently also good if you want to achieve success. How on Earth you’re meant to know what is the right time and the right place to smile I don’t know, and that’s before you have to remember to do it. I refer back to the assessment report that noted my limited range of facial expressions. This smiling business is rather hard work!

And, of course, there’s the inevitable mention of eye contact. If I make eye contact for too long with people I am, apparently, insecure, but if I don’t make eye contact enough then it’s because I have something to hide. And someone like me, who struggles to make any real eye contact with anybody at all just reads this stuff with blank incomprehension. How do I figure any of this out? What do I do?

The last of these pieces of “advice” is probably the only one I could actually follow. I am perfectly capable of giving a good firm handshake. Though I fear that by the time I’d sat up straight with my arms open trying not to touch anything and to work out what gestures and smiles and eye contact to use I’d have such shaky sweaty hands that even my handshake would fail the “business success” test!

***

Yes, this was just some bonkers article off the internet. Yes, I’m being slightly facetious here (but only slightly). Yes, it’s not typical of all workplaces and I’m sure there are some fabulously inclusive disability aware places with people who don’t judge on any of the above. Yes, I’m sure that sort of workplace is not suitable for everyone, autistic or otherwise. I’m trying to avoid a barrage of “but it’s not really like that” comments because I’m aware that all I’m actually doing here is giving a personal response to an article I saw by accident on the internet.

BUT, the very fact that such an article exists indicates that there are people out there who are still equating the things above with “success”. There is no mention anywhere in the article about the person’s ability to DO THE JOB. It’s all window dressing. It’s all superficial. And on some level it must be true – that those things matter to some people, and if they are the things on which they judge potential colleagues or associates, then autistic people are really going to struggle. We’re at a massive disadvantage – and possibly most massively disadvantaged in the world of work at the “higher powered higher earning” end of the market.

I am not in a position to get any such job, and never was. My business acumen is zero, my ability to cope with working in such an environment lasts for a few hours at most these days. I have never aspired to such a career, but maybe there are autistic people out there who would like to work in such an environment and do have exceptional business skills, but who are judged by their ability to sit “correctly” or do appropriate things with their hands, and their skills will be ignored. That makes me sad.

And, if being able to do the seven things listed above is what enables one to be “successful” then I am destined for “failure” because I have a condition that means I cannot perform those tasks “properly” even with massive effort and 40 years practice. I am DOOMED!!!! (Not really, that last bit was sarcastic)!

And the real irony is that I am actually honest, open, and even, at times, can be secure and confident. But because I have a communication disability, some others might have problems perceiving that. Which is sad!

To reiterate – I was definitely cross about the article being quite so ridiculously ableist and I do think there are some massively serious points to be drawn from it when compared to the skills of an autistic person. However, I am old enough and ugly enough also to laugh at such an article, and to say “What a load of rubbish!” My reaction of “Well, I’m an automatic fail then!” wasn’t one of despair, but of sarcastic amusement and a gentle “Fuck you, because you really are clueless about what it’s like to live my life!” to the author of the article and all such articles!

I say this because my husband once wrote a post about how he tripped over a hillock while out running – he’d intended it as a funny story but got a huge number of concerned comments about how sorry people were that he was injured when he wasn’t really injured at all, just recounting an amusing event!

If anyone is still reading at this point and has understood any of this blog post then I congratulate you wholeheartedly! Reward yourself with a cup of tea! I’m off to sit on my feet with my arms crossed, and play with my hair while wearing a blank expression – and I won’t be shaking your hand because I’ll also be holding a cup of tea!