(Longer version of what happened to me as a result of my diagnosis)
That story was initially published anonymously on Vocal Media, an online publishing platform. I chose to be anonymous at the time because I was worried about The Company reaction. But guess what, they are not bothered at all. I tried to speak with them and didn’t get any response.
It’s all true though and if someone is really curious, I can provide written evidence. However, I chose not to disclose their name as that would mean I’m playing a finite game.
The story can be quite distressing at times, even though I don’t include description of any of those really traumatic events, I only mention them by name. But then if you ever suffered PTSD you may find it difficult. Sometimes it’s good to face your fear but of course, like with everything, it’s you who decide if now it’s the right time.
I am an autistic female in my early 40s and I currently live in the UK in a town an hour on the train from London, but I’m not British. I was only diagnosed autistic 5 years ago. I will be using both the term autistic and Asperger’s in this story. I personally prefer autistic but I know for a lot of people who are not autistic themselves it means ‘with associated learning disability’ and that’s not how I mean it.
As a little child I was apparently completely normal. Apart from the fact that I was trying to run off my mum whenever she took me to town or I insisted on walking straight into nettles even though I already got burned on them merely two days earlier.
It was only when I started school that my mum got concerned. She realised I suddenly changed and became withdrawn. She took me to a child psychologist and was told I’d grow out of ‘it’ if only she keeps reminding me to behave like everyone else. ‘Look at me when we talk. If you don’t, I will not react.’ Well, I tried to control my behaviour just to keep her moaning at bay but otherwise I wasn’t too concerned. I didn’t have many friends but most of the time I felt content in myself. The only time when I wasn’t was, when I tried to convince my peers to do something that I thought was right and no one would listen.
It was only when I was 17 that I started worrying about the fact that I’m different. It was after like 12 years of seeing my dad seriously struggling with his mental health. I always knew I was a lot like him and I suddenly felt that if I don’t change, I’ll end up the same way.
So I tried for a couple of weeks to be as social and eloquent as I could, till finally I realised I had to stop because I was getting severely depressed. But in general I somehow coped and my mental health was fairly good. Except of those moments, when, for example, I had to leave university education after doing physics for three years, because I was being constantly challenged by teachers due to, how one of them worded it ‘looking like if I didn’t know what was going on.’ Well, it was some kind of progress I guess from secondary school when I was being told how intelligent I was and that I could achieve everything I wanted if I ‘only learn how to get on with people’. My life was this constant confusion and full of mixed messages.
It is said that autistic kids and teenagers often get bullied. Well, it only happened once to me, by my roommate from the first year of university. I certainly was not bullied when I was a kid, although I was teased from time to time. Partly I think, what protected me from bulling was, that when people tell me nasty things, I kind of don’t care so the bully doesn’t get the reaction they were hoping for and they move on. That approach however prevents me from reacting when I possibly should.
What concerned me more was, that I never felt like I can be myself with people. I remember this conversation I had with my neighbour’s friend from my university dorm. We seemed to get on quite well and had chats when she was coming over. One day we had what seemed like a heart to heart conversation so I honestly told her I like spending a lot of time on my own. She seemed put off by that, like if she decided I can’t be trusted, and our relationship was never the same after.
In my early 30s I moved to the UK. Life wasn’t bad. I didn’t earn much but I still had enough for some international travels. I visited Brasil once, Malaysia twice, Hong-Kong for Chinese New Year and several countries in Europe. I also managed to buy my own, spacious, two bedroom flat.
Regarding my private life, it wasn’t maybe as good as it could be but then, it often isn’t for a lot of people. I had one long term relationship that developed from friendship but we often argued and finally split up. Otherwise, although I felt like loads of guys were interested in me, things never progressed anywhere. There were no dates or kisses and finally they would just started acting like if they were really irritated with me and I never knew why. None of them ever asked me out so it wasn’t like I rejected them. Only around the time of my diagnosis I realised that, contrary to what’s written in popular magazines, guys don’t just ask girls out. First people exchange hints and I wasn’t giving or getting them.
When I was 37, I was offered a job in The Company. I was so happy at first! I thought I was progressing: from a support worker in a care home I moved into an office based job supporting tenants in a large housing association. Our tenants were people with history of mental health problems or those who experienced serious issues in life like bankrupcy, addiction or domestic violence.
At the time I was in touch with, well, let’s call him The Boyfriend. We weren’t dating at the time yet but I had to give him a nickname, so that will be it. We loved exchanging emails but he could never make himself to drive to my town. One day I got annoyed and pressed him for answers. He finally said he’s really stressed at work and also is awaiting Asperger’s syndrome diagnosis.
I was completely shocked! I was thinking, for goodness sake, what is wrong with me, why can’t I get attracted to a normal guy for a change! I was pretty sure my ex had Asperger’s and that’s why we were arguing that often. I really didn’t want the same to happen to me again.
However, because I really liked him, I thought, let me give it a go and see what happens, so I started reading about Asperger’s and, after a couple of days I came across an article stating that Asperger’s in females is not as rare as it has been previously thought.
OMG, I thought, that’s what The Friend was telling me a couple of years before! She was at the time working as a teaching assistant for a boy with Asperger’s and used to laugh at me saying that I ‘must also have it’. ‘Get off me!’ was my usual response, ‘It’s just my personality’. And yet it suddenly started looking like The Friend was right.
As I was reading about Asperger’s, more and more become clear to me. I realised my dad also had it. He used to work as a welder and his mental health must have deteriorated due to constant exposure to flashing lights at work, but no one ever picked up on it. If he was given support to find a different job, something where he could use his strengths instead of constantly facing his weaknesses, or at least something that wouldn’t affect him that much, our family life would have been so much better. But instead, he was left completely on his own wondering why other people could do that but not him. He was a brave and hardworking man, yet somehow life took everything away from him.
Whenever I came home as an adult or there were other visitors, he would come out of his room to show off his various certificates he received for training at work or in the army. He was completely ignoring the social context as he was so focused on delivering the message that he used to be completely different man, a man with a life and a purpose. Yet, no one ever got it like that.
His communication was so out of place that he was diagnosed with schizophrenia towards the end of his life, even though he never experienced any hallucinations. I realised at the time that he was just too burned out to communicate in more neurotypical way (neurotypical refers to the rest of the world, the people who don’t have Asperger’s).
I also realised why I was so excellent at maths even though from the second year of primary school I had this burning impression that I don’t understand a single thing. I realised that I probably have a savant skills in working out patterns and applying procedures and I just used those to solve complex mathematical problems. It got to a point that, 10 years after being out of higher education, I signed up for a course in post graduate maths at Open University (UK) and I was only admitted conditionally as I was told I should be studying at the last level of undergraduate course but that one would start another 6 months later.
So not only that the course was was too challenging and I couldn’t remember much from my previous education, I also never spent any time actually studying it. I remember how, like 10 days before my first assignment was due, I emailed my tutor asking where to get the tasks from. He was probably rather shocked. I was pretty much deemed to fail. And yet, I passed all the assignments very well, receiving between, from what I remember, 84 percent for the first, and 96 for the last one.
I never studied theory. To be honest I didn’t really understand what the course was about. At the time I thought I was just being lazy but now I know I must have subconsciously realised I wouldn’t understand it anyway. When I needed to do task for my assignment I would find something with similar core in our course book and copy how this part was done and when I got to the part that didn’t match, I’d look for a different example that worked and I would just keep repeating those steps until I finished, without having any deeper understanding of it.
I also understood why my relationship with a therapist I was seeing privately went astray. After several sessions, when I relaxed and become more myself with her, which meant that I stopped making an effort to control my body language, she took it as a sign of me being really low and having no confidence and insisted on finding the reason for that. She started implying that I must have been through some horrible trauma that I didn’t want to admit.
But I really was not! My family wasn’t the happiest one and it was difficult to cope with my dad’s moods sometimes but my mum put consistent effort to keep it working and also, I at least had the understanding that my dad was ill so it wasn’t a normal behaviour. I could still vaguely remember him from before he become unwell, how he used to spend time with me and my brother and how he was very supportive of me.
Yes, I had a short period of time when I was on antidepressants and a couple of episodes of self-harming but I never seen myself as someone who’s been through trauma. I thought I was somebody who can deal with whatever life throws at them. I just had this strange feeling that life should be more than just being able to cope, but somehow it never was for me.
On my last session I told the therapist that I think I have Asperger’s. She initially seemed quite shocked but quickly progressed to ignoring the implications of it. She even said that possibly I had Asperger’s because when my mum was pregnant with me, she was angry with my dad a lot. I didn’t know how to react to that so I just didn’t say anything and then, when I was at home, I sent her a couple of challenging emails.
I ended up arguing with her and later contacted The Organisation That Controlls The Councellors to suggest they needed to improve their training but they were not too bothered, basically implying that autistic clients should be ok with such a third class service.
Initially, after realising I’m autistic, I didn’t want a diagnosis. I thought I managed without it for 37 years and, as there was no support for autistic adults, there was no point getting one. But then I started having problems with a colleague from The Company, let’s call her The Lady. She was practically bulling me so I changed my mind and asked the GP to refer me, which she did straight away. I then emailed the diagnostic centre to ask to bring my diagnosis forward due to bulling at work and they agreed.
The thing is, they really should have not! It only intensified my naive belief that diagnosis will protect me from The Lady’s behaviour. What they should have done instead was to explain to me that nice colleagues will support me whether I have diagnosis or not and bullies will continue to bully me even if I have 10 of them and then they should have told me to wait like everybody else. That would force me to assess the situation and decide if I can cope with it, instead they just dished me out a piece of false hope that later influenced me to make silly decisions and put myself in situations that could have easily killed me.
My diagnostic appointment was run by two ladies. I was quite pleased as I didn’t hear, like some other females do sometimes, that I can’t have Asperger’s because I have a boyfriend, but otherwise I don’t remember anything special about it.
It only happened later, on my post diagnostic appointment, when this story received The Diagnostician, one of the ladies who diagnosed me. She was a speech and language therapist by trade and I quickly realised that she constantly changes the way how we normally build sentences to better communicate with me. Although sometimes it also seemed like she was trying to confuse me to check how much I understand.
When, at the end of that appointment she said she will be preparing my employment support plan, I shivered. That’s when I expected to finally hear The Words: oh, poor you, it must have been so difficult to live all those years not knowing who you really are. But don’t worry, now you have your diagnosis and you have me. Let me make you all better.
But somehow The Words never appeared in this story. Instead, what she wrote was: as I said I will now be preparing your employment support plan and in order to do that I need to know what problems you’re having at work. I then pictured her sitting in front of a form that she needs to fill in and I immediately felt like I needed to help her. That made it so much easier to open up. Normally I absolutely hate talking about my problems to people who are trying to help. It’s probably an autistic thing.
There were other examples as well of course, I don’t remember all of them now but speaking with her was different. She never asked a question, instead she created a sentence with a void, like if she was using words to mimic a form where you fill in the gaps, and I then rushed in to do that.
That made me quite confused though. I did read a lot about how bad communicators autistics are and most of that was written by world-famous experts in the field, and yet I was in this town, not very big one, talking to somebody who made me feel like I was a brilliant communicator because not only I knew straight away what was expected of me but I was also willing to do that.
I did try to Google that method of communication but never found anything so I finally just left it. But I sometimes thought about The Diagnostician, wondering if she would be able to communicate with my dad so that I had at least one normal conversation with him before he passes away.
Things at work weren’t progressing well. The Company was making an effort to appear like they’re supporting me, but problems never ended. I was moved twice to a different location and I managed to build positive relationships there but it didn’t help my case. I also gave a speech in front of like 150 people about my experience of living with undiagnosed Asperger’s and I wrote a short article about it for The Company magazine.
I wanted to influence people so I used information, as that’s what I’m good at, while at the same time The Lady was using her advanced social skills to provide me with negative PR. I had to go on antidepressants eventually and my relationship with The Boyfriend suffered, but somehow, I didn’t want to leave that job. I was stubborn and stupid, that’s how I see it now, but at the time I believed I was doing the right thing. Obviously I was hoping this will finally stop. I was officially disabled so bulling me was against the law, right?
There was this one situation, that I remember very well. It was in December. I was temporarily transfered to work in a different location, where an older man was in charge, let’s call him The Manager, as I knew him from before the bulling started and remembered him as fair and supportive, exactly how managers should be. I came for a meeting with him on my day off and I tried to explain to him the problems that I had with The Lady. ‘I work with her’ – he interrupted, only of course he used her name in that sentence. That meant he supported and respected her. I insisted on talking, however, determined to finally be heard. ‘There was a memo sent out about you in June, that you’re having some problems and you want us to know about that, remember? I’m helping you’ – he said totally out of nowhere.
‘What memo, what you’re talking about?’ – I asked. I was shocked. He didn’t respond, was only looking at me like if he had something to say but didn’t want to let it out, just in case. I didn’t know how else I can ask to be told the truth. I felt like crying. He wasn’t responding so I finally just say goodbye and left.
I then kept wondering what that meant. It didn’t make any sense, did it? But yet, he said it so it must have meant something. This thinking put me into state of trance, when I was only able to focus on thinking through various situations that happened to me at work and it lasted for a couple of days.
Finally I realised what that must have meant: the memo must have been about my serious mental health problems, memory loss and about the fact that The Company wants to support me regardless. Of course I didn’t know anything about that.
It upset me so much that I started sending angry emails to The Company and immediately felt like I was put on some kind of conflict deescalation loop. I don’t remember the details now, but, after almost every of my email I would get an automatic response written like if it was a procedure for me to follow, something that only The Diagnostician would be able to do. I guess The Company must have contacted her, her details were in my diagnostic report.
Those emails were short, to the point, contained two alternative email addresses for me to write to and one of them was always highlighted in pink. So I would always write to that pink person for some reason. I can’t explain how it worked and I would cetrainly not contact somebody normally only because they’re highlighted in pink, but at the time, when I was so furious that I felt almost insane, it worked like a signpost stating ‘and now go there’.
I remember, at some point, I even got a signpost to call them and that it needed to be done by midday. I don’t quite remember now, how it was done. I think one of the automatic responses stated that the person will be back in the office after 12pm to answer or alternatively I can call the number that was given, and because I didn’t want to receive any reply by email, I decided I’d call instead. Yes, I know it’s silly when I talk about it like that. It’s like if I somehow imagined that everything is connected in that system and if I chose to call, the person who sent that email will somehow get notification not to contact me.
Being kept in that loop made me feel safe and I quickly stopped screaming at them, but continued emailing just to take the opportunity to say how I saw things from my perspective. But then, suddenly, it felt like I fell out of that loop. It took me a bit to understand what went wrong: one of the automatic response gave me again two options of people to contact. One was a manager that I never heard of, the other, highlighted in pink stated: alternatively contact someone else. Who’s someone else, I asked myself? And then I decided to email The Manager. The purpose of that was to identify a person who I still trusted so that they could contact me and bring me back from that state. But The Manager never replied to me.
In total it took me a year and a half to realise that I had to leave. But by that time I was so pissed off with everything that happened to me that I knew, I can’t just let it go. I decided I would take them to employment tribunal to show off to everyone in the country, and maybe even in the world, that bullying autistic people has to stop.
When I was preparing for that move I briefly spoke with The Perfect Lawyer. He explained to me that cases like that usually end in settlement and I thought, fair enough, it would be too much work for a lawyer to fight a case like that during several hearings. But I knew I can never accept to be quiet about what happened to me so I quickly decided to represent myself.
I didn’t know much about law, had no experience of courts, I was pretty much on the edge of mental health breakdown and jobless, was fighting with withdrawal from antidepressants and The Boyfriend was not really that supportive of the whole idea but I had a strong intention to use that case as a wake up call for the entire world.
By that time I was working part time as a cleaner because I knew the manager of that cleaning company. I was too scared to look for a job anywhere else and even to come back to the place where I worked before The Company, even though my colleagues there were very supportive.
I disclosed my Asperger’s diagnosis to my Job Centre coach and she was very understanding of my problems but honestly advised me not to tell anybody. I knew, she was right, people won’t understand but at least she did. However, a few weeks after that I was told, I’d be moved to somebody else. This one was rude and patronising when I tried to explain that, due to what happened in The Company I lost all of my confidence. ‘But you were working before, didn’t you?’ Like if she completely didn’t hear what I was saying: I didn’t lose my confidence because I suddenly decided to develop Asperger’s instead, I lost it because I had been bullied at work.
Finally she did exactly what The Lady would do: she typed up a new contract between me and her and asked me to commit to it. She briefly explained what was in it but as the appointment was short, I didn’t have a chance to read it. I read it later, from home and it turned out some important details were different than what she told me. It looked like she wanted me to miss them and then use that as an excuse to cancel my benefits. Like I said, it was something that The Lady could come up with. I remembered her warning me that she knows a lot of people.
So it looked like The Lady was using Job Centre staff to continue to bully me, probably so that I would drop my case. I totally lost it! I started sending angry messages to the job coach that I’m going to kill myself because of her. Hard to say if I meant it, but it felt at the time like it was the only way I could vent.
After I calmed down I made an official complaint stating what happened before I lost control. The response that I received was the nastiest thing I’ve ever read about myself. Basically, Job Center stated that ‘it was not like that’ and then proceeded to tell me how rude and horrible my behaviour was. How many messages I sent, how many times I mentioned suicide, how distressed the job coach was. But the best thing was, how many people they told about my behaviour without my consent, while insisting they were trying to help. I never attended any appointment after that. For some time though they were still paying my benefits.
In the meantime I emailed The Company’s Lawyer, that means that one who represented The Company. He was a partner in a large law firm. I don’t remember what excuse I used to contact him but the purpose was to show off that I’m not intimidated. What he then did, however, was, he contacted the tribunal about it and got a judge to tell me that I needed to rewrite my claim because it was too long. I didn’t. I wouldn’t even know what parts I should ignore. With what happened later, however, I could easily rewrite it into like merely three sentences.
When the response to my claim came I didn’t read it straight away. I kept postponing it as I knew that something was wrong with it: it was extremely short, a few times shorter that what I wrote. Yet, the response is what’s being used to fight the claimant so something substantial must have been there. What was that, I was thinking, that they managed to come up with while at the same time ignoring most of the points I raised? When I finally read it, I was completely shocked: The Company claimed that my autism diagnosis was private and that they paid for it!
I didn’t understand what was happening: how were they going to prove that? I kept going through different scenarios in my head and what seemed the most likely to me was that The Company’s Lawyer hired computer hacker to alter my medical records in NHS system.
It took me the whole three days and nights of almost no sleep to finally come up with something that made more sense in a neurotypical world: there were fabricated documents in my file that were being used to get higher management against me every time I was trying to reach out for support. And the people who were in charge of preparing the response for the tribunal must have not checked the paperwork properly as they were strongly influenced by the memo that was sent out about me ‘in June’.
When I finally got that, I sent an angry email to tribunal about how much I didn’t like how the claim was being handled. I received general response that started with that sentence: ‘Thank you for your recent correspondence that we put into our file.’ What file, I kept asking myself. That was not something that people would normally say. What kind of file, for what?
What kind of correspondence it was? Well, a general one. So did the tribunal staff put it into general file? No, they couldn’t, files are used to classify things. You can’t have a general file as you’ll never be able to find anything in it. So, once again, what kind of correspondence it was? A rude one, I had to admit. So did the tribunal staff meant they had a file for ‘naughty claimants’? Did I want to be in that file? Oh, no! So I apologised.
I then started wondering, how come that short sentence caused me to make all that mental effort and come up with the right reaction? And I suddenly got that: that’s how The Diagnostician used to speak. So she must have been there somehow. I vaguely remembered she told me that she worked with various organisations to research problems that autistic females are having, so that must have been why.
I never asked the tribunal if that was true, because, what I was supposed to say? It is quite normal in neurotypical world that people give each other tips on how to handle others when they’re not very pleasant so there was no reason why someone very skilled in how autistics communicate could not do that to me. But that is always being done behind the person back and never discussed openly, that’s why I didn’t feel confident to ask the tribunal if The Diagnostitian was really there.
At the time I also realised that if I wanted to look for support with my claim no one would believe my side of the story. Everyone would think that a large company could not be that stupid, writing such a lie in an official document for employment tribunal proceedings. They would just think that I must have gotten two diagnoses: an NHS and a private one.
But then I thought about The Perfect Lawyer. When I first spoke to him, he said he was aware of what sometimes happens to employees with Asperger’s. So I thought, he was the only one who could help. I emailed him and asked if he could give me a discount for a consultation. He was a partner so he was quite expensive but what I really wanted to check was, if he was on my side.
He was not from my town or any other towns close by but I remember I wanted to go there on the train and the journey was not too long. How I remember it, it was somewhere towards the sea. I’m not quite sure but possiby he was based in Weston-super-Mare. He said yes and seemed genuinely concerned. It was such a relief at first but then suddenly I felt that I had to tell him I won’t be coming. Somehow me going there didn’t make any sense.
I didn’t know why, at the time. I didn’t understand why I rejected help when it was offered, but now I know: that did not line up with my intention about using my story to protect every autistic person all over the world from any future bullying. And if I got The Perfect Lawyer on board, The Company would quickly offer me settlement, possibly a good one, but the conditions would be to keep quiet and if I rejected, it would look like I only went for tribunal to give them troubles, because Employment Tribunal is about claiming compensation, not about telling stories, however important they are.
I started having paranoid thoughts around that time and even The Friend said she was getting concerned that I may end up insane, but I was too scared to ask my GP for referral to psychiatrist as I knew that psychiatrists know people from The Company as they needed to communicate about tenants sometimes.
Finally, at the beginning of September 2017, I received an email stating that my benefits have been stopped and that was the last straw: I slowly started hallucinating. With the last bit of sanity I managed to make the decision that I needed to go to my family home. I travelled there while my hallucinations started intensyfying. That was the beginning of my first psychotic episode. Over two years later I had another one, also caused by stress, but not nearly as severe at all. I know now that I’m much more likely to have it again than if the first one didn’t happen to me.
When my hallucinations finished I emailed The Company CEO and also the tribunal on separate occasions to inform them of everything. I never got any response from either CEO or The Company Lawyer. It took me a few more months to finally drop my case. The Company had all that time in the world to establish I was telling the truth and react accordingly. I often wondered how they were going to protect themselves: Yes, we did put fabricated documents into her file but we didn’t bully her, we’re not like that. Is that what they were going to say? No, obviously not. They were hoping I would never recover.
Since that time I spent several months being unable to work, five months in total in psychiatric hospital and had a suicide attempt, but I am finally off my mental health medication. And I started wondering, how come all of that happened to me. It was The Company that first broke social rules by bullying me and then they broke procedures by not checking their papers before submitting the response to the tribunal, and finally ignoring me, but it was me who had to face all the negative consequences. And I never got that chance to campain. More over, it’s only lately that I told my psychiatric nurse about what happened. That’s how scared I was that no one would believe me.
Otherwise my life is not bad though. My mortgage is paid off and due to an angel protecting me, I think (or, rather, my mum’s bank account), I didn’t get into dept over that. My relationship with The Boyfriend is stronger than ever. It’s a miracle that we stayed together despite all the horrific experiences that I’ve been through, that could easily break even best neurotypical couples, and we hardly argue.
The fact that I observed The Diagnostitian, how she was changing her communication style while speaking to me, made me want to try to learn how to speak with The Boyfriend this way and most of the time it does the trick. Although I’m not very confident when it comes to those sentences with a void. I need some additional training.
I can use them as a way of giving a choice but I have the impression The Diagnostician could do much more with them.
As a choice it works like that:
Let’s say you want to find out how the autistic person in your life would like to spend free time with you. You should give them two options, but using very general language, without words ‘me, us, we’. It could look like this:
1. It’s possible to go to such and such place.
2. Doing such and such activity would also be interesting.
3. It would be good to do something nice together.
In the above 1 and 2 are the options that we’re being given, and 3 is the statement with the void, where ‘something nice’ is the void. The technique works especially well in emails, and both me and my boyfriend love when someone communicates with us this way. Although, obviously my boyfriend doesn’t know I’m using any technique on him, he just thinks I’m a great communicator.
The organisation where The Diagnostitian worked got closed down a couple of months after my diagnostic appointment. And I’m not confident to look for her. There is something taboo about how we use communication to influence others, wouldn’t you agree? That’s why my story has to end in here.