I failed!

So, basically, I didn’t pass my LLOP (low level order picker) driving test. I am not sure how it happened – I miserably failed on reversing from the right, was unable to do it properly at all and it didn’t make any sense to me, while I coud do reversing from the left at the first attempt almost without thinking.

I really don’t know how such a massive discrepancy is at all possible, but maybe it’s due to dyspraxia? We did the reversing from the left first and I did it almost automatically and then when I had had to do it from the right, I couldn’t do it automatically again as my brain had an idea to just repeat the same moves that I did while reversing from the left, and that’s why I was standing there and thinking that it doesn’t make any sense?

While I was taking driving lessons, while living in Reading, I was apparently very good at manoeuvres, but I’m wondering now whether the instructor meant I’m much better at manoeuvres than an average person or whether I’m much better at manoeuvres than at driving on the road (that btw wasn’t coming easily to me at all). I don’t remember having similar issues then, however the instructor was obviously focused on teaching me and paying attention to what I had difficulties with, while today the trainer was focused on finding people who could drive the truck without difficulties.

That means, I’m without a job again. I’m not sure how I feel about that as I wasn’t particularly looking forward to it. Regarding the sensory issues it was probably not as bad as I expected, I coped with both cold and noise better than I thought, even though I only had around 3h of sleep last night. However, I feel quite competitive. If I had some spare money I’d go for external LLOP training only to prove myself that I can work out how to reverse from the right.

There was a young guy on training, I think he said he’s 20, it kept being discussed that straight after passing LLOP training he’d be trained on a different driving equipment, even though at a different time we were told that the company standard is that all the new starters are only trained on LLOP and only more experienced employees go on to be trained on something else. So I asked him how he convinced the company that he can do both and was sure to hear he driven LLOP, and possibly another thing before, but he just said ‘they just offered it to me’. Strange, I thought.

Today, as we were doing our training, he had a bit of difficulty for like 5 minutes and then became absolutely natural at it. So I asked him directly if he driven LLOP before and he said, no, never. He also claimed he never drove anything else in life, didn’t even have one driving lesson. Strange, I thought again.

And then, as we were called for the test he was asked to go first ‘as you are more experienced’ the trainer said. Great, I thought. Why people lie this way? To get attention, I suppose. Possibly I should try that sometimes, but then I can never predict if similar behaviour is going to backfire.

There was also this situation yesterday, that I didn’t want to mention as I make an effort not to shine negative light on my employers, even prospective or ex ones (even when I mention Home Group – I only speak the truth about them), however, I now think the situation must have been a joke or an exaggeration. It was about communication and the fact that my mind can so easily come up with all the wrong things to say, however, I’ll leave it for another day to write about it as today I’m rather tired and still a bit freezed up.

Otherwise my day was good, thank you. Just had my 5th beetroot muffin, I didn’t have one yesterday so that’s 6 days after I baked it and it was still soft and moist. No gluten and loads of chia seeds are going to be my secret from now on.

Tomorrow I need to apply for a job in Royal Mail. Normally I don’t like giving my employers names but how else I can explain that I’m sorting letters?

I want my DBS.

I feel like going on strike

Well, I was in a good mood for a few days already so now it’s time to be low. Btw I do not think that means I’m bipolar (which is my second diagnosis): I didn’t overspend, I didn’t get drunk, I didn’t even overeat (ta da!), I also didn’t make any strange plans regarding my future and I believe my insight was good. I think I really was just in a really good mood, possibly elevated slightly due to the use of therapy lamp.

Why I’m feeling bad now, then? Because I keep getting this idea that I’m not meant to have only one job: whatever I choose to do I’ll be running into trouble. It will either be too much contact with people and too much politics (like in a care home), sensory issues (in a warehouse), too boring (cleaning) or not enough time for myself (live in care). I do realise that other people don’t have some of those challenges and also cope better with those that they do have. Perhaps they don’t loose sleep (like me know) over the fact that they can’t find an ideal job and just get on with what they have, as long as it’s good enough.

One of my problems is that, when I have been somewhere for a bit of time, I start focusing on negatives and find it very difficult to move on from that type of thinking. Over the years I learned that making decisions based on this is not good to me and it’s much better to be logical and stay in a job because it is, in general, ok. However, what is really happening is, the fact that I force myself to be logical doesn’t mean the negative thinking will go away – no, it will stay with me and slowly eats me away, until one day I get sacked (oh, ok, that only happened once).

I don’t know what to do about that. It seemed I was getting ok with the fact that I need to have at least two jobs, that I can alternate, but now it seems to me like it’s a sign of failure, something that no one would understand, let alone support.

Gig economy is supposed to be bad for us, that’s what we are told, isn’t it? And yet, now, I need to put myself in a situation where I purposefully reject the idea of having permanent job, with all it’s benefits, to protect my mental health. Other people don’t need to do that and yet their mental health is good.

I really do not think that’s fair.

I’m all freezed up!

So, basically, it turned out my training for the food warehouse job is full time, even though the job is part time. The agency staff didn’t inform me of that, but also, I didn’t ask. It obviously makes sense that part time staff gets the same training that full time staff, but I just didn’t know the training will be that long. I mean, I don’t have a big problem with that – it’s paid and I have no other commitments, plus, it’s good that they’re so throughout about training, not like in the last warehouse job I had, where I was told to move pallets ‘over there’ using manual pallet truck, even though I never used one before. It was really funny when I tried to operate it and it just wasn’t behaving at all how I expected and there was no one next to me to ask what to do.

So yes, I’m not complaining about the extensive training, I am just saying I’m a little bit surprised.

Other than that I am curious how I’m going to cope – tomorrow I’ll be learning how to drive electric pallet truck called LLOP (who knows what that stands for, training didn’t cover it so far). If I pass I’ll become qualified Christmas Reindeer and will be rushing around so that people in the area could get their Christmas food on time. It is partly exciting, I must admit, but I wonder how I’m going to manage with working in such a large space (I don’t like large spaces), exposed to sudden noises and without heating. I wonder if the limited contact with people and lack of exposure to workplace politics is going to make up for all the other factors I am not so keen on. It will be interesting to see actually, so keep your fingers crossed for my LLOP training tomorrow.

After finishing the training today I waited 50 minutes on the bus stop as two buses didn’t turn up and that’s why I’m all freezed up, even now, two hours after getting home (of course the central heating is on and I also have an old type of gas heater in my living room that I have on at the moment). I sometimes wish to be like The Boyfriend who copes with cold really well, but it’s oversensitive to heat, so when it’s summer I’m glad I am myself. Oh well.

Tomorrow I need to get there by 7am, which means I need to be up around 5am and I still won’t have enough time to use my therapy lamp fot the same length of time I normally do, I hope that won’t affect my excitement levels (oh, actually, I’m too freezed up now to feel excited but I had very good mood during the training).

Nothing new to report regarding communication, although there was this moment when I found out that ‘high visibility vest needs to be fastened’ is called 360 rule – that’s really fun, exactly something that I could come up with and that wouldn’t be understood by my colleagues in care.

Goodnight. I need to get up and switch that gas heater as I’m suddenly getting hot. I may sleep on the sofa again today though.

Good mood continues

As yesterday, I had this idea to make a post to record that I’m in a good mood. If I only post when I feel miserable, people could come to a conclusion that I always feel miserable and it’s to do with me being autistic. It’s really not like that at all, although, I guess, I may get into a bad mood for different reasons that neurotypical people would (like being in noisy environment or, even worse – socialising for too long, who would have thought?).

As yesterday, I have absolutely no idea why I’m in a good mood. Possibly it’s the side effect of SAD lamp? In that case I’d recommend it to everyone, because I really do feel like I won a lottery, even though my bank statement shows less that I would expect to have this time a month ago (where’s my DBS???). It will be really interesting to see if this mood will stay with me for longer, fingers crossed.

I was thinking recently about my ‘work personalities’ and I summed up myself as having 3 of them: researcher, practical/focused on processes and an activist. When I worked in care neither of those personalities could really shine. I used the practical one to deliver the service and, as I already mentioned here, that was not always appreciated (a resident’s bath chair looks like it’s getting broken? Magda is looking for problems again, instead of focusing on people, that’s what it is).

When I said researcher, I mean I am someone constantly looking for patterns. I used that ability to do complex maths and to study IT, which was a great fun, yet I never had an opportunity to actually use that in my career, which is a bit sad. I really do think autistic people need more career advice and not something that is overly simplified because we oversimplify things ourselves already, so we don’t need neurotypicals to do that for us, seriously. I have a blog about autism but I don’t think I’d like to be autism researcher. Firstly, I wouldn’t then be able to be an autism activist, as that would be conflict of interest; secondly, I’d need to then work with other researchers, possibly neurotypical, who could try to research me during our lunch breaks and that wouldn’t be fun. As much as I want autism research to progress, being seen as full time research object is not what I want from life.

I’d like to be researcher in medicine, possibly working on creating new drugs. That would however require going back to university, without and guarantees that I’d get where I want to be at the end. Maybe I’d just end up in a local pharmacy instead? It’s also possible that, even if I got a job in research, I’d have to be against politics, that would have nothing to do with patients best interests and everything to do with company profit. Never working in that area and having limited social imagination puts me in a situation where I am unable to weight pros and cons of this route, therefore I’d rather not take it. I do hope that people who read this won’t think that I’m lazy and lacking ambition, I’m just trying to be practical in situation where my access to information is very limited.

So that brings me to my third work personality: an activist. I suppose having a blog makes me an activist already and complaining about Professor Baron-Cohen even more so. As much as I feel that sacking me from my job in care was a step too far, I am grateful to my life circumstances for that as I really used it as an opportunity. I mean, I don’t have many readers for now, but things may change with time, and I know that I have to keep blogging to get there. Possibly one day my views on the state of autistic research and support available for us will matter. I’d never start a blog when I was employed. One problem was, I was constantly fed up so there would be nothing to write about, the other thing was, my work colleagues didn’t know me as a blogger and I was afraid to upset the status quo. Although I didn’t disclose to my prospective employers that I have a blog or that I’m autistic, the blog is available online and possible to find and I am who I am.

Thinking about all the above, it took me years of trial and error to understand my strengths and weaknesses. I probably still don’t fully get them now, and this is, unfortunately, part of being autistic. While in secondary school I was constantly being told how smart I was and no one ever realised that there are things I am unable to do. That’s why there really needs to be more support and quality research – something that doesn’t include ‘autistic mice’ but focuses on autistic people instead.

Yay!

As this blog is meant to describe me, as an autistic person, and I did post in the past about some of my difficult emotions I think it’s only fair to also post when I feel better. So basically, I feel incredibly excited since yesterday afternoon. I have no idea what I am excited about: my shop cleaning job finished two days ago and my DBS is still not back. I received a letter from mum’s bank and they’re not going to refund her any of the stolen money that we have no evidence for, so what she’s going to get is like 10 percent of what was stolen and the bank is having difficulties to even admit their employee was stealing – they don’t even use the word fraud but instead call it ‘this situation’. Fantastic.

Home Group did not even contact me regarding the email I sent two weeks ago – this is, I guess, them saying they don’t really care about what happened to me, as long as their business is intact. It’s really strange that all those big companies create procedures for similar situations, and then, as things happen, the employees never follow them because they don’t want to disturb the internal politics. Would someone working in a customer service department stand up against their CEO – as I already contacted him and he ignored me? As much as I understand that in hindsight, having procedures that state a different behaviour is expected is only clouding my, autistic, judgment – if there was no procedures at all I’d be much better at predicting other people behaviour, or at least that’s what I think. I wonder what Professor Simon Baron-Cohen would say about that.

Ok, moving on from Home Group – I decided to complain to University of Cambridge about Professor Simon Baron-Cohen and his extreme inability to communicate with me. As I stated in one of my previous posts, I felt at some point that it’s getting a bit better but then suddenly Professor sent me an email to say he feels sorry for me, which just totally didn’t make any sense. I do not feel sorry for myself at all. In general it is said that autistics tent to have misunderstandings with people, but I’d expect it will be a bit better when you talk to world famous autism researcher, and instead it’s much worse. Professor Simon Baron-Cohen has an incredible ability to misinterpret absolutely everything that I am saying, therefore what value his research has? I only contacted University of Cambridge yesterday afternoon (Friday) about it so it’s too early to say anything. As much as I am curious about what will happen, I doubt my excitement comes from that.

I managed to secure another temporary job, in a warehouse this time – in a food distribution centre, I will be starting a training on Monday (it’s Saturday today) and it will include… driving pallet truck! I wonder how I’ll get on with that. Please keep your fingers crossed for me. Is it possible that my excitement comes from that? Possibly my subconscious mind already knows that I’ll be ok there, will get noticed for my ability to follow procedures and understanding systems and will keep getting promotion after promotion until I get to the very top? Oh well, probably not, but I’m very curious about how I will cope. I never tried this kind of job before so it will be interesting to see how it will work out.

I was also thinking that possibly I should have two part time jobs instead of one. I used to do that in the past and I quite liked it: the transition from one job to the other helped me to release any tension; while being in one job only makes me feel trapped. I suppose there should be more understanding in the society for having two jobs – it seems like it’s often being seen as a sign of failure, inability to commit or possibly not being wanted anywhere full time. But the question is: do we need to commit? Obviously if you want to progress commitment is needed but plenty of us don’t want that, we just want to pay the bills and have some money left for fun things, so what is the commitment for?

It’s snowing at the moment, and it’s extremely windy. I’m unlikely to leave my flat today. I decided, however, I shouldn’t be spending all day in bed so I moved to the living room and I’m on the sofa… such fun! I don’t suppose I’m excited for that either. As I stay in I may do some updates on the blog: I decided symbols (as a form of communication) will get their own tag, as so Redecor. Redecor is a very important part of my life now, hard to understand how I coped without it, and I’ve only been playing for around 10 months. The more patterns I have available to use, the more fun it is, although again, I don’t suppose my excitement is caused by the game.

Did I mention I baked another lot of beetroot muffins? I used better quality beetroots this time and added some almond essence – they’re much better this time, no beetroot flavour, so this is, I think, the way to go with my baking. However, again, I don’t suppose that is what I’m excited about.

I also realised a little while ago how much better my mental health is now, when I don’t work in a care home any more. Possibly I should never go back to this kind of job? And not because I’m not a caring person. One thing that I found extremely difficult was the need to constantly switch between tasks: I could not do one thing for long enough before a different resident needed an urgent assistance. On top of that all that bitchiness you get there… God help me, seriously! And the problem is I tend to oversimplify everything where people are involved. I can think, for example, that everyone who works in a care home is caring so they will be nice people. And believe me, some staff really are not! And I don’t talk here about scandals like Winterbourne at all; the staff may be actually caring towards residents but bitchy towards themselves – not fun.

Ok, end of post. What am I excited about though? I still don’t know, but it’s a nice change at last.

Mum is going to heaven

I posted a few times about how I understand symbols and how they help me identify my emotions. I actually regret now that I didn’t give that topic a separate tag – they are all under communication tag. I may go back to those posts and rectify that but it won’t be today.

Just to make it clear, I never read anywhere about how autistics understand symbols, I guess there was no research on that, especially on how we can use symbols to identity our emotions, I bet no one would come up with that and even if someone would, it would be difficult to execute. Therefore I write about myself here but I assume the same applies to other autistic people.

So, there was this Redecor design released recently, a large bed with canopy that reminded me of excess fabric used in Catholic Church for various occasions and the pillow in the middle of the bed looked like somebody’s head. I mean, who puts pillow in the middle of the bed? Even I don’t, there are two pillows on the right and two on the left. There can be small, decorative pillow in the middle, but this one looked like standard pillow, therefore, together with the duvet it reminded me of someone laying down there, someone who doesn’t have much life left as the pillow was rather flat.

I want to emphasize here that when I saw this design I didn’t do all this complicated thinking consciously, I just felt that the pillow looks like someone who’s at the end of their life and I only explain now to the readers how my judgment got me to make this connection. I hope that is quite clear.

That’s the design I’m talking about

At first I was put off by that and didn’t want to do this design but then I decided to do it in a way that would emphasize my emotions and I’m quite glad with the result. Gentle florals and sky (sky and heaven are the same word in Polish, ‘niebo’) belong to the new world, this one where my mum is going to; while the check on the bottom pillows and sheet is a heavy pattern so it stays in here, on earth. I hope you can follow my understanding of patterns.

Doing this design helped me to process my emotions and accept the situation I am in: Yes, my mum is at the end of her life, but she’s going to heaven, so it’s a good thing. I can’t keep here here, with me, forever. She needs to go when she’s ready, she’ll be much happier there, surrounded by clouds and flowers, looking out at me from above. It will be much better for everyone involved.

I hope the above explanation makes some sense to you. If it doesn’t, that’s ok, but please remember I’m autistic and I possibly think in a different way to you. The fact that you can’t follow my thought process doesn’t mean that I’m weird.

Good quality sleep (contains app recommendation)

This post is meant to be informative so I will really try to refrain from mentioning my parsnip muffins (that are btw all eaten now) or any other healthy muffins, my childhood, my mum, my alcoholic brother (I’d really like if he stopped drinking, but somehow I can’t even imagine him being sober), Polish Christmas traditions, pierogi, SAD lamp or The Friend.

I’ll also try not to mention Home Group in this post, although it’s them that caused me my first, stress and insomnia inducted psychosis. So yes, good quality sleep is very important, but poor sleep is still better than no sleep at all, please remember it.

It is said that autistic people don’t sleep well and I certainly believed that as my problems with sleep were with me as long as I remember. My parents would make sure I’m in bed by 9pm but very often I was still awake at 1am, and that was when I was a child! It was also very difficult for me to nap during the day, although it would happen occasionally.

When I was put to do night shifts at work for a few weeks I could barely get any sleep during the day. I’d thought I’d get used to it but the second week was even worse than the first: in total I slept 14h during the entire week, I felt partly unconscious and had to go to GP for sleeping tablets.

After my second psychotic episode I started looking for ways to improve my sleep. Initially I found a program based on sleep restriction, which was available on the NHS but I wouldn’t be able to take it due to my mental illness history, which was a relief really as treating my inability to sleep with restricting sleep even further felt even worse than pulling teeth!

And then I found an app called Sleep School created by dr Guy Meadows, a sleep physiologist from London. The app is based on acceptance and commitment therapy and doesn’t requite any sleep restrictions, more over, dr Meadows advises to stay in bed and rest if you wake up in the middle of the night.

I reluctantly signed up and started doing all the exercises. It felt really weird at first, how observing what my senses are telling me was supposed to help me with insomnia? But somehow it worked. I started seeing first results after around two weeks: falling asleep was getting easier and easier and after a few months I was able to fall asleep within 3 minutes (down from 2-3h). I got slightly disappointed later when I found out dr Meadows stated falling asleep quicker that 15 minutes could mean we’re overtired.

Mind you, I fall asleep without using the app now, just practicing techniques I learned from it, and after a while they got so automatic that I don’t even think about using them. One could say I retrained my brain.

I still had problems with falling back to sleep if I woke up around 2-3 hours before my alarm was due, so, again, following the knowledge from the app (even a little bit of light is damaging to our sleep) I decided to try eye mask and that reduced number of early morning awakenings, but didn’t fully eliminate them.

Mind you, I wasn’t even actively using the app any more and some of the courses were still not done. So I went back to it to find out what to do to fall back asleep and it turned out we have to try noticing body meditation again, which is exactly the same techniqueto get us to fall asleep in the first place. I tried it yesterday and it worked! I fell back to sleep at 4am, even though my alarm was set for 6.

Since adding eye mask to my sleep routine I consider good sleep to be 9h, no kidding, I slept 9h on number of nights, even though I wasn’t overtired. 5h is now poor sleep, while it was almost standard before using the app.

As I said the techniques provided by the app are a bit strange at first and I really didn’t see how they would improve my sleep but I was determined as I wanted to avoid another psychotic episode and being on meds to the end of my life. And, surprisingly, it worked!

Dr Meadows warns us that insomnia cannot be fully eliminated and therefore I wonder if I ever get to a point when I don’t need to use sleeping tablets even if I’m under severe stress. Possibly not, but still, I am suprised how well it works for me when I’m not under stress and how easy it is to switch back to the techniques learned when stress is eliminated. I’d really recommend everyone to use this app. It can be life changing.

Life as a cleaner

Tomorrow is my last day of the cleaning job in a popular clothing shop. My DBS is still not back and I don’t know what I will be doing till I get it. Mind you, I didn’t know I’ll be bored with this job that quickly – it’s only been two weeks and I am already feeling meh. I really feel like I need some meaningful contact with people and having the impression that I have impact on somebody life. When I just started work in care, everything was new and interesting and I wasn’t planning how to get out of it. There is so many job advices for autistics where being a cleaner is considered a good fit for us that I’m really shocked I can’t wait till this job is over. I mean, don’t get me wrong, I’m glad I tried it, and at least I know how I feel about it, but it really is too repetitive for my liking.

Cleaners sometimes face difficult choices at work. Never heard about a cleaner who damaged art exhibition as she thought it was rubbish? There’s been more than one instance of this type of overzealousness (is that actually a word? Correct me if I’m wrong, as you may know English is not my first language) and when I was at my first university, studying physics in Łódź, we had an academic teacher well into his 60s, who only had a master degree. I don’t know how it works in other parts of the world but in Poland staff with master degree are only allowed to do support tasks with students while they work on their PhD; they can’t deliver lectures or be responsible for exams and this particular teacher was doing it all while, due to his age, it was obvious he had more than enough time to do doctorate. It was very confusing to me, until someone said, and who knows, it could well be true, that his PhD work required to grow some crystals and one day cleaner throw them to the bin!

Poor cleaner, I hope she didn’t get fired for that. Anyway, after that happened, the man told his supervisor he’s not doing it all over again, period, and was allowed to stay and enjoy all PhD privilages. It looks like he wasn’t thinking in terms of infinite games, which is quite sad.

Mind you, he was one of the teachers who made me to study extra hard because I didn’t get all the questions right on the exam, and then, when I finally answered everything he asked me perfectly, he only gave me a C. I was thinking at the time that was because I was the only female in the entire physics group, but now I think, even though that must have play a part (‘you only came here to find a husband’ said in front of everyone else was an acceptable comment at the time, I really do hope things have changed since then) I think my autism was probably also at play. One teacher actually told me she lowered my grade because ‘I look like if I didn’t know what was going on’. But that is how I look when I’m focused on something! Obviously at the time I didn’t know this is due to autism and that I’m autistic. I didn’t know anything about it at all, although the first time I’ve heard about Asperger’s syndrome was when I was in a primary school.

It is said that girls don’t get picked up early enough but the first person who I knew was diagnosed with it was a girl from my primary school, a few years younger than me, very bright, she was getting the best grades in her year, but yes, she looked like if she didn’t know what’s happening around her, never spoke to anybody during break times and she used to rock regularly. I didn’t know anything about Asperger’s at the time and to be honest neither me, nor my friends were that interested, it was enough for us to know that this sensation had a name: genius who looked like if she was severely impaired. I really do hope she’s doing ok now, got a good job, where she can use all her strenghts and is not forced to rely on her weaknesses to get by.

I also know she was diagnosed in Warsaw, our capital city, just over 100km from our village and it was possibly 7 years after my mum was told by local child psychologist I’d grow out of ‘it’. Mind you, I didn’t present as severely as that girl, probably because, although quite intelligent, I was not as bright as her, and also I spoke to other kids at school (I never was a popular kid though) so my mum never felt the need to pursue any further diagnosis. Mind you (using the same expression in two sentences in a row!) mum would never get a diagnosis for me, I was just too normal for that time. And actually, when I was in my early 20s I probably appeared like if I in fact grown out of it. I was parting, was confident and knew a lot of people. I just didn’t know how to make friends with them. They all seemed like acquaintances and nothing more. Sometimes I thought a person is my friend and then they always chose somebody else to spend time with, whenever they had a choice. I was only good for times when they had nothing better to do.

Although I used to have A Friend (don’t confuse with The Friend) who however stopped treating me well quite quickly… oh, that is a long story. I’m not sure if I should be putting it in here. Maybe one day, when I decide what details should be left out, partly to protect her identity (strange thing I still care of her enough to think about that), partly to appear at least slightly mysterious to my readers (ok, I only just came up with that reason now as giving one reason only to do something just didn’t feel like enough).

Yes, so, I wonder whether I’ll have enough things to blog about when I discuss everything from my past. This blog is about life as an autistic person so everything goes, even my parsnip muffins (mind you, I already ate all of them, which is a shame as I feel a bit peckish). Parsnip muffins are part of my life and, because I’m autistic, it’s an autistic life so parsnip muffins are part of my autistic life. Makes sense, I hope. Plus, one could think that being autistic I only eat food that I know well and that is not true! One day I need to tell you how I went to Malaysia and on my first night ordered Thai green curry because I liked the taste of Thai green curry sauce that I bought in Sainsbury’s once or twice. Mind you (again!) no one explained to me that they eat incredibly hot food in that part of the world and the Sainsbury’s sauce was our, European version of it. At other times I ordered ‘sweet and spicy chicken claws’ because I didn’t know what claws mean… well, on both occasions I ate the whole of my dinner. What helped was telling myself that I’m travelling so should be opened to all the new experiences. You see, I’m autistic, but I can do it when it makes sense to me.

It was also in Malaysia where I got my tattoo. This one that was meant to cover my self-harming scars, but the tattoo artist didn’t do very good job with it and they are still visible on the sides.

Anyway, I was speaking about food earlier on. What should I have for dinner? Russian pierogi or, possibly, baked beans with toasted potato waffles? It’s strange that I can’t eat chips but love potato waffles, isn’t it?

Social reciprocity

In this post I try to play an autism researcher so it may not include any description of emotions, unless I feel that adding it will be appropriate. I also try to refrain from commenting on my parsnip muffins, or any other of my healthy bakes that I made in the past.

So, social reciprocity for me is when we try to respond to other person emotions in a conversation, whether face to face, over the phone or via chat or email. For example if The Friend tells me that work is very busy and she’s really tired and I tell her that I feel really sorry for her and understand how her job can be tiring and stressful and I do hope her colleagues are supportive and that she’ll manage to get some rest over the weekend, that is social reciprocity. But if I tell her she’s tired because of limited exposure to light and she should get SAD lamp and use it every morning, that is not social reciprocity, that is giving practical advice.

In real life I think both of the above approaches are important and if SAD lamp is going to make anyone more energetic throughout the winter then I see no reason for denying them the information about it, but for some reason our society values social reciprocity more than giving practical advice.

It is said that we, autistics, are totally crap in social reciprocity, and I guess that is right. Some of that is probably our natural reaction to other human beings and it can’t be fully changed but we forget about an important factor while discussing the concept: neurotypicals have plenty of opportunities to practice social reciprocity with others – we, autistics, don’t, as people don’t understand our reactions and emotions and often make us wrong as a result.

Just a few weeks ago, when I had my training for live in care job, I mentioned about my mum, how I couldn’t believe she had dementia because, even though she changed, her memory was intact. I spoke up because I wanted people to know that good memory doesn’t mean there’s no dementia, and then the lady who run the training thanked me and said that it must have been difficult for me to talk about it so she really appreciate that. She made an attempt on social reciprocity, and the only problem was that it wasn’t difficult for me to talk about it at all. If it was, I wouldn’t even be able to find words in my head to form coherent sentences, that’s how bad it can get when I consider something a difficult subject.

Perhaps non autistic people experience the same feelings they had when something happens to them when they later talk about it, but I don’t think that happens to me, or at least not every time and not with every feeling (although it probably happens when I talk about fear), so the trainer assumed that was what happened to me but I was just focused on passing an important information.

After the trainer’s comment I however started thinking that I should have felt bad, but I wasn’t, therefore I am a bad daughter. So the attempt on social reciprocity backfired.

I can also think of another situation, when I was in my twenties and spoke with a friend’s friend. We used to get on rather well, or at least that’s what I thought, and I told her that I really like spending time on my own. Of course high functioning autism was virtually unknown then and I had no idea I’m autistic. The girl seemed not to like my disclosure and our relationship was never the same after that. It seems to me she found it suspicious and decided I cannot be trusted.

I can think of many other situations when I was being made wrong: people laugh at me saying I’m so funny when I just go about my day but when I actually try to make a joke no one understands it. I get stressed over silly things and need help but no one is there to deliver it; at other times people rush to help me when I’m coping perfectly fine. I want to be understood, but no one is listening, not even private counsellor; at other times I want to be left alone and people insist I should open up. I even remember situations when I was explicitly told I’m weird when I tried to explain something about me to people.

What I just described above is certainly not an environment where social reciprocity can be learned, it’s an environment where we learned to ignore other people needs the same way they ignore ours; it’s an environment where we have no space to be ourselves, therefore it’s not possible for us to give space to other people to be themselves.

I’d like all the autism researchers and commenters to remember that.

I want my mum

I spoke with mum the first time in a bit today, as she wasn’t feeling good earlier. Nurses never asked me to speak with her regardless and I felt uncomfortable askig for it, also, if I have to be totally honest, I didn’t want to speak with her knowing that she may be unable to hold sensible conversation. So today, when I called the care home and the nurse said my mum is not too bad, I asked to speak with her, and unfortunately, I wasn’t able to communicate with her at all.

I started with saying that I wanted to talk to her and in response she was just repeating the word ‘talk’ in every sentence, but the sentences didn’t really make sense, except the first one, when she said she’s not in a mood to talk. ‘But I am your daughter – I thought. – Do you not want to talk to me?’

She always wanted me to call more often and I wasn’t doing that because, most of the time, we didn’t really have much to say to each other. She didn’t understand the world I live in and I didn’t want to talk to her about my problems as she would never give me any sensibe advice. One thing she used to say a lot was that I should move to a smaller flat. She didn’t understand that I can easily afford where I live and having an extra bedroom allows for more storage and having guests over (not that that happens a lot). Mind you, she was staying in that bedroom for 9 months and the plan was that she’d stay with me to the end of her life. Well, that was my plan; her plan was rather different.

I think she only came to stay with me because she wanted to show my brother that she can leave, hoping that would give him a wake up call and he’d stop drinking as a result. It didn’t work. My brother in fact realised with time he was better off when mum was at home as there always was food on the table and he wanted her back, and me – to take care of her, but he continues to drink.

I feel so sorry for myself thinking the time I spent with mum, when she was here, was so affected by all those problems we had at the time, and that are still present. I mean my brother drinking – it often felt like my mum brought my brother with him, as she was unable to stop thinking whether he paid electricity bill, whether he has something to eat and what if he kills himself because he was left all by himself.

On top of that she was constantly worrying about the money that was stolen from her by her favourite bank employee and the bank reaction, that, let’s be honest, was totally unacceptable – they didn’t take us seriously at all till after we informed the police. Mum was so worried about that money, even though she had no sensible plan of spending it. She was always very tight with money and once started argument with me because I bought a pack of penne even though I still had a little bit of spaghetti left in the cupboard.

I felt so powerless over her moods and so disappointed that she’s unhappy. I thought I’d make her life easier as she was able to go to town every day and do some shopping in Polish supermarket that had much better choice than the local shop in our village. I thought I’d make her life easier because she doesn’t have to have arguments with my brother any more, and yet, she let him scream at her over the phone.

If I have to be honest, I’m not terribly sure I wanted her to live with me. But I wanted to make her happy.

When she was here I really didn’t believe she may have dementia. Her memory was actually quite good and only recently I found out that there’s this type of dementia where memory doesn’t get affected to begin with. I did notice she changed and her ability to make connections between facts wasn’t great, but I thought, well, she never was terribly bright, she is getting oder and was through loads of stress, so that must be it.

There was only this one moment when I really thought something was terribly wrong. We started watching a film with quite a compex story and after around 20 minutes she summed it up in a way that a child probably would, simplifying everything that we saw. I was so shocked when I’ve heard her, especially that my mum used to like a good film. And then, after she said that, she didn’t want to watch it any more, she said it was strange.

So that was the moment when I thought something must really be wrong with her, but then, what I was supposed to do, call an ambulance? There’s no treatment for dementia and the drugs available can only reduce some symptoms.

In a way I’m really glad she only deteriorated when she was already in a care home and when I had power of attorney. If that happened here, when she would still be able to walk and I wouldn’t have access to her savings, I don’t know what I would do.

When I was speaking with her today, I remember myself thinking, I wanted to move her to a private care home because her understanding was still good, and now it’s not (or, to be precise, her speaking isn’t), so does that mean I’m wasting money? But it’s her money and she deserves quality of life that government care home was unable to provide (it was so crowded that if one in 10 residents would want to get out of bed and walk around the staff wouldn’t be able to perform their duties as it would be too chaotic).

Whether mum has dementia or not I don’t want her to spend the rest of her life in bed, unless she’s unable to get up any more, of course. But I wouldn’t want her to suffer for too long.

What I wanted to say when I started this post is that whenever I was faced with a demand I thought was too much for me, I would curl up in bed and refuse to do anything about it and mum was always making an effort to talk me out of my misery and finally she’d succeed. I want to do the same now: my mum has dementia, I’m not dealing with this, ever. I want my mum to come and talk me out of not dealing with her dementia. Does that make any sense?

Today is my day off but I feel rather groggy. I used the SAD lamp in the morning, as usual, but I think it may be general refusal to deal with life and the cold outside. It’s possible that the lamp is helping but is not remedy for everything.

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