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.

Only 4 patterns on this image

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?

Flight to Bangkok

I saw an add about discounted flights to Bangkok and thought, let me try to book, just to see how much they are, and return was supposed to start from just over 370 pounds, which is very cheap. However, like it often happens, when I chose my dates and wanted to proceed to booking, the website informed me there’s no flights available. Well, I wouldn’t go anyway, I was just checking.

My resposibility for now is to stay in the UK and wait for my DBS. I was informed by the company that offered me a live in care job, it is still on stage 4, that means at my local police station, and nothing can be done till it’s pass 90 days. 90 days, I didn’t even know it could be that long! Hopefully it won’t get to that. I think it’s been 30 now.

I had loads of energy yesterday and I attributed it to my SAD lamp. I was thinking, if it continues like that, tidying will become my new hobby. Today, however, I feel somehow tired, and I don’t know if it’s because I didn’t use the lamp properly as The Boyfriend was here and socket is on the side of the bed that he normally uses, or maybe we need to get tired from time to time to get rest. I really don’t know, but I also started having the impression that my joints are not as stiff as they used to be. Hard to say if this can also be attributed to the lamp, I never read anything about it.

Yesterday I read an article on BBC about two British female celebrities who admitted to be diagnosed autistic as adults. They were television presenter Melanie Sykes and Christine McGuiness, a model. I am really pleased to hear about those two, even though before reading that article I never heard of them (I’m not interested in celebrities and hardly ever watch TV). I really think this is very important for how autism is being potrayed in the media: neither of them ‘look autistic’, they both wear make up and nice clothes, cope in the public eye and, I suppose, are not obsessed with train time tables. And yet, they’re autistic. I’d like to thank to both of them from here for revealing that. I may later on go on YouTube and watch some videos with them to see how they cope with talking to other people, but I don’t promise that.

Guess what’s my favourite colour?

I was quite sad when The Boyfriend was here, but didn’t want to tell him anything. I was thinking a lot about the fraud my mum become a victim, and how patronising is the fact that I now have to make any effort at all to get the money back. I was thinking that I don’t deserve it and that it all wasn’t meant to be like that at all. Selling the land my mum owned was supposed to bring us joy, not trouble. It all was meant to be different.

Like with Home Group, I suppose, which was meant to be a stepping stone to a career for me and instead was a stepping stone to madness. Thank god, I’m not mad now. And also not most of the time (I wouldn’t book that flight to Bangkok, I promise!).

I was wondering if I should have a go at making my own Christmas pudding, you know, made of carrots, parsnips, beetroots and zucchini but The Boyfriend said it would need time to mature, but how is this a problem? We could eat it for Easter instead. I absolutely love Christmas pudding and could easily eat it 5 times a week, although, I suppose, if I use the ingredients I mentioned, instead of traditional ones, it may not be as exciting.

I was also wondering lately how come me, with first class bachelor degree in computer science and some other courses in maths and physics, work as a cleaner, even if that’s only temporary. I don’t suppose autism can be directly blamed for it, although I do admit, I suck at interviews, but the fact that I’m terrible with computers, don’t understand maths at all and absolutely hate physics is probably what should be to blame. So how come I got as far as successfully studying those subjects at the university? I guess, that’s where autism was involved: I’m very good at copying what I see and maths, IT and physics are so easy to approach this way! Other people behaviour can also be copied but this is a bit more complicated and there’s so many exceptions!

But the fact that I can repeat even the most complicated sequence of steps to get to the correct solution, doesn’t mean that I know why the steps were there to begin with (although I can see if something fits or if it doesn’t), and then when it comes to apply what I learned this way to a new problem, I can’t do it. I can only do something that is similar to what I’ve already seen. If there was a job somewhere that woud pay for solvig the same type of problems over and over, I would be great at it, but don’t expect me to deal with things that are new!

Mixture of patterns, as most of the time

This is not to mention that every autistic person who seems to be great at maths is going to experience this problem, and I really do hope most of them would cope with new problems too, but I think it is important for parents and educators alike to understand that if we sometimes say we feel we’re not good at something, this may in fact be true, even though what they see suggests the opposite.

As usual my today post is a bit about everything. When I just started blogging I was trying to be organised and only post about one thing at the time, but then it felt like I was trying to become an institution, while I’m most certainly a person, even if an autistic one. And as a person I have a mind that wanders. So now, I’m just about to have a cup of tea. 99p per 50 teabags assam tea from Lidl. When I was working full time I used to get Twinings tea, which cost a bit more. Maybe not as much considering I’d only have a couple of cups a day, but when one doesn’t have permanent, full time job, watching every purchase suddenly becomes important.

Fingers crossed my DBS comes back this coming week. I’m really bored of not having ‘a proper job’ and I guess I’m ready for another challenge.

I do think sometimes though I am really glad I’ve been sacked. I’d never move on otherwise and this blog wouldn’t exist. Not that I have many readers, at least for now…

Being off work – a little sum up

From what I remember, the last time I was actually at work was around the end of April, so it’s approximately 6 months now. Therefore I’d like to sum up this time here, not from the perspective of someone who can’t find a job (I did only start looking recently and received some job offers immediately) or someone who can’t pay the bills or put food on the table (most of my bills are paid by direct debit so that’s not an effort at all and I usually eat on the sofa) but from the perspective of an autistic person who managed to take time off and reflect on herself.

Initially, after I was suspended, but still employed, I took a bit of time to just rest. The year before I was suspended was a difficult one: in December 2019 I was sectioned while having a psychotic episode (a second one) and I spent a month in the hospital and then a few more weeks at home, first off sick, then working part time as a phased return. At the beginning of March 2020 I went to Poland to spend time with my family and that’s when Polish government introduced lockdown. It was all very stressful, while it was meant as a holiday before going back to work full time.

I managed to come back to the UK on one of the rescue flights a few days before I was initially planning to as staying there I was worried too much. I remember than when I was packing I got obsessed with taking all my belongings with me, like some acrylic paint that I was using to do art after recovering from my first psychosis, pijamas that was always there waiting for me to come over, some books I used to read in secondary school or even some not very elegant underwear. I ended up going back with two suitcases, not just one. I remember having that thought while packing that I’d never go back there… and that kind of turned out to be true. I went back there but things were never the same any more.

I came back to the UK, went to work, did like two or 3 shifts and my dad suddenly died. And I couldn’t go to the funeral.

I didn’t have good relationship with my dad at all but I was always telling myself that it’s due to his mental health problems and I really needed to see him that last time to say that I understand and forgive him and love him anyway and that was taken away from me, the same like his entire life.

In the meantime the UK introduced lockdown and all the services that I was intending to use to feel better, that finally were being available to me due to having history of two psychotic episodes (they were not available when I was just autistic) were starting to operate online instead of face to face and it didn’t agree with me. I also was unable to see The Boyfriend for several weeks.

In May I found out mum was taken to the hospital and from there to the care home, without asking her if that’s what she wanted or me what I thought about that. The care home staff was terrible and she was complaining of suicidal thoughts so when government in Poland suspended quarantine for people coming from abroad I went back and took mum out. I then quickly found out that there’s loads of money missing from her bank account. That was in the middle of August 2020.

Then mum and me decided she can’t stay in Poland so she’d come with me. My brother was drinking more severely than before and mum would be at risk of being hurt if she stayed there.

So at the beginning of September mum came with me and almost immediately wanted to go back. She would come into my bedroom on loads of mornings when I was meant to go to work to talk about how she’s worried about my brother and then I had to really rush in order not to be late. While my brother would call us and scream at her. Ten minutes after the phone call finished she’d say that she had a feeling that he changed. She was trying to control my spending and comment on clothes I was wearing and how I arranged my flat.

Rather plain reality

At the same time her bank completely ignored our complaints. At some point they actually changed the subject of complaint from ‘missing money’ into ‘poor customer service’. It wasn’t until I got the police involved that we finally felt someone is listening. Still, things were taking loads of time and we were asked to go there to give witness statement and, pandemic aside, when I was seeing how bank ignored us and our evidence for months, I started thinking that they’re all part of organised crime and when we go there, they’ll find us, kidnap and kill us to keep us quiet forever. It was reminding me the situation with Home Group – that was exactly subject of my delusions during my first psychotic episode (although it’s quite obvious that Home Group would like to keep me quiet, isn’t that right Mr Henderson?) and I started getting somehow paranoid.

Around the same time pharmacy (or maybe it was meds prescription service?) messed up my meds two months in a row so I’d decide to get off them as it was too stressful worrying if I’m going to get them on time…

I was off sick for three weeks around the time, certainly not enough, but then I had mum around the house moaning the entire time (well, I can’t really blame her for being stressed, it’s just that I didn’t know how to deal with that any more) so I just ended up going back to work. And that’s what happened… I ended up suspended and then fired. I’d never expected that’s what would happen to me, but it did.

So, first of all, I took some time to just do nothing and recuperate. Then, I wrote My Story. I’m glad I was off work when I did it as it needed a lot of focus to decide what details need to go into it, what needs to be left out. It took me two weeks to write it. If I was working at the same time I’d need probably like 6 months for that as my thinking process would be affected if I wouldn’t be able to fully focus on it.

Then I had this idea to start a website. At first it was meant to be very informative one and my personal experiences were meant to be left out. I wanted the website to be the a start of my own business – one where I’d be giving speeches to companies about my experience of employment with Home Group (at the time I still called them The Company) and it was meant to draw attention to workplace discrimination in relation to autism.

If you only just started reading now, I was employed by Home Group, harrased by a colleague, asked GP for autism diagnosis referral (that I earlier thought won’t be needed), got prioritised by the diagnostic centre due to my work situation but the diagnosis didn’t stop the harassment so I handed in my notice and took Home Group to employment tribunal where they claimed my diagnosis was private and they organised it through AXA occupational health! Seriously! That’s how bad workplace harassment can be if you’re on the spectrum.

A little bit of optimism.

So, as I was thinking, that was very important story for people to hear but knew that Home Group would likely try to stop me if I try to talk about it just like that so I was spending loads of time planning what to do about that. I was even trying to arrange for a legal advice but at the end decided not to proceed with it. Legal advice felt like I was going for a fight and that wasn’t my intention at all. My intention was to raise awareness.

So anyway, as I was thinking how to secure my right to talking openly about what happened to me in Home Group I realised I missed an important factor: if I approach businesses with my story, they may possibly want to pay for me to talk to their staff, at least initially, and I may be able to get my business going for a while but the end result won’t be what I was aiming for, it won’t be better understanding and inclusion for an autistic staff.

The end result will be that people in charge get that message accross: if you have an autistic employee taking you to employment tribunal you’d better check all the paper work five times!

That wasn’t what I was aiming for. What I was aiming for was understanding and inclusion and therefore possibly from this place in this post I should express that I’m ready to forgive (well, at least I’m trying) and that Mr Henderson can contact me through my psychiatric nurse (he was given her contact details once) if he wants to apologise.

However, I need to make it clear here, this is not something I can keep quiet about. As I already stated million times my aim is to raise the awareness. Being quiet won’t achieve that.

Being positive

I deleted a post yesterday. It was about some of my not very positive experience regarding the situation I am in. I have difficulties deciding what is appropriate to write about here, considering I do not want to create an impression of toxic positivity, and what is going to be seen as a moan. I guess we all experience disappointment at one point or another and become disillusioned with authority figures.

I can at times be rather challenging when I’m not happy about something and the strange thing is, it used to work for me quite well for years as people would suddenly take my view into consideration after I challenged them. I wouldn’t say it was good for me though as I would first need to get really upset to challenge someone and then, after they started treating me better, I’d get upset that they ignored me when I was nice and polite.

Lately, however, it doesn’t seem to work any more. I don’t know why. Possibly, after the situation with Home Group (aka The Company) I’m too sensitive about any perceived injustice and I become challenging too early on so the person on the other side doesn’t get to see they mistreated me in any way, or possibly, due to my age (43) I am being seen as having signs of menopause and therefore I’m being ignored?

Having a blog that is in part devoted to communication puts me in a position where I should focus on being better communicator myself. I’m not sure, however, how this can be achieved without external support.

Focusing on patterns calms me down.

I often have the impression that people don’t listen to what I have to say and the reason is, apparently, what my therapist in 2015 used to say (that was just before I realised I’m autistic) I’m not confident enough. I did tell her I felt confident, it’s just people treat me like if I’m not and she just totally dismissed that explanation.

I did realise since then that being confident means (for neurotypicals) having certain body language and tone of voice. I didn’t have it. And, funnily enough, that was at the time when I still put loads of effort into what is called masking (when an autistic person makes an effort to behave like everyone else).

I wish people didn’t focus that much on my body language and tone of voice and instead just listen to what I have to say. I wonder why this is so difficult to achieve.

Diagnosis is just a label

I think people focus on diagnosis too much. We are all different, the same like neurotypical people.

Some of us can be quite social and like being with people in situations that are well structured – like a training at work. Some of us like drawing attention to ourselves and tell jokes. I am personally aware of a female comedian who makes fun of her personality, which is basically all about autistic traits. I emailed her agent once to say I’m convinced the comedian is autistic and can she let the poor woman know.

Redecor

I didn’t get a response. Possibly that comedian realised at some point, after having started her comedian career and she also realised if she reveals she’s autistic, people would not laugh any more.

BTW The Lady used to love that comedian. Isn’t it ironic at all?

Workplace bullying

Not so long after I was diagnosed I set up a blog. I had loads of courage and commitment but was confused about what to write. I couldn’t talk about The Company as my case was in Employment Tribunal, and anyway, I didn’t know at the time they were going to claim my diagnosis was private so whatever I would say wouldn’t be anything interesting.

Now I can say with confidence this is what sometimes happens to autistic employees. Possibly most people wouldn’t be strong enough (and silly, let’s admit it) to go through all of those troubles to prove it. And I would not advise anyone to do that.

My honest advice is that if you find yourself in a similar situation you look for a way out.

Sometimes you really need to look for a way out

Diagnosis has no use to protect us from bullying. And with some people you just cannot win. That’s what the world needs to understand, and only then we can have some progress.

That’s what I want to tell you now: sometimes you need to step away and come back with a new perspective.

Do we need the diagnosis?

I asked that question on my female autism group and almost all responses said we do. Why? For adjustments, protection from discrimination and for self awareness and acceptance.

NHS waiting times are too long and some of us, expecially females, are being refused diagnosis due to what GP or even the diagnostic team sees as ‘being not autistic enough’.

Redecor

Well, I didn’t have any of those problems. GP referred me during my first appointment, probably because on the day I felt very unwell due to physical illness so I was too tired to do what we call ‘masking’ and then the diagnostic appointment was brought forward due to my situation at work so I only had to wait just over 3 months.

Yet, a year and a half later, I had my first stress inducted psychotic episode and another couple of months later a suicide attempt. My views are influenced by my experience of course. So, do we need the diagnosis? No, not at all! We only need the post diagnostic support.

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