I hadn’t meant to abandon this blog for so long. I actually have a few different posts drafted but they all need a lot of editing.
In recent weeks I feel as though I have gone through a bit of a period of depression and feelings almost similar to grief over losing the friend I mentioned in my last post. I know that sounds extreme but we were friends for years. Anyway, I’ve been keeping busy with my job, skating (although not very often at all, lately), and some extra photography work. I also have been on holiday to the seaside which was mostly a nice break, especially as the weather was perfect for it. As well as that I’ve started going to an autism support group which I will definitely write something about here when I’ve been to a few more of them. I’m also planning to go back to group skating classes, probably just over the summer, in the hopes I might meet more new people there too. I’m proud of myself for making some positive changes and being a bit more sociable.
Today I thought I would write something about how I first came to realise I’m autistic.
Everybody’s path to diagnosis is different but there are definitely some recurring themes in how women realise they might be autistic. Many women with autistic children recognise themselves in difficulties their children experience and realise that they had a lot of the same problems growing up. Other women get diagnosed with various mental health conditions like personality disorders, depression, anxiety, obsessive-compulsive disorder etc… and then they realise from their own research that they were either misdiagnosed or that there could be an underlying cause to many of their issues. This was certainly part of what happened to me, but there was one major issue in the workplace that sparked off my personal research into autism and consequently, my realisation that I’m on the spectrum too.
It was sometime in late 2016 that I first started to seriously suspect I’m autistic. Before that, I guess I always thought of myself as being a bit eccentric and a very anxious person. I always thought that various family members of mine were likely to be on the spectrum, but I didn’t see it in myself because everything I knew about autism was about autism in boys and men.
At the time I was struggling in my first ever office job. I was very anxious and depressed a lot of the time. At work I was mostly very quiet as I masked my problems to the best of my ability, but I kept having hysterical crying fits and anger outbursts when I got home, which I now know to be meltdowns.
It wasn’t one thing at the job that was causing me problems, it was loads of things.
The individual tasks of the job were not the problem, but the way I was asked to do many of the tasks was challenging for me. I found that people would interrupt me all the time, speak to me too fast and they expected me to be able to quickly follow their verbal instructions. I was generally okay with written instructions in emails, or very simple verbal instructions, like “do you know where the staples are?” but for complex tasks, especially for tasks I had never done before, I always felt like I needed everything written down. Since I did not know I was autistic then, I didn’t feel that I could ask for written instructions or notes without seeming really stupid and/or demanding and/or just plain weird. So I had to cope with people giving me verbal instructions.
Certain people in the office were harder to follow than others. One or two of them were very vague and impatient. Not being able to follow them lead to me asking them to constantly repeat themselves, which lead to a lot of frustration between some of the senior staff and myself. As time went on I got comments from senior people criticising me for not being confident enough in my abilities. My appraisal in my first year of the job was also really harsh and critical. This upset me a lot because I didn’t feel I was unconfident, I just felt like I was not on the same page as everyone else there, somehow, like there was something I was missing. Some kind of manual that nobody had given me. Some training I had missed out on. I felt like everyone else spoke another language to me. I just wanted everything written down in clear step-by-step instructions, I wanted to be left alone to get on with my work and I would have been fine.
I also had enormous trouble with phone conversations and similarly, would have to ask people to repeat themselves all the time. I ended up telling my line manager and the boss that I was having some hearing problems. I did have to get my ears syringed at one point, but that didn’t make any difference. I knew there was nothing physically wrong with my ears.
I knew something else was the matter because I knew I had had the same problems in my previous job, and the ones before that, and at university, and at school. I knew the problem was in my brain, and how I was processing things. I felt like I had some kind of mental blockage when people talked too much to me. I have felt this way my whole life. I have the same problems even with friends who talk too much for me. I also had a lot of problems at university when taking notes in lectures. I would come out of lectures with barely anything written down. I couldn’t listen AND write things down. I could only do one or the other. My brain doesn’t let me do both.
So I started Googling all these problems and eventually I came across auditory processing disorder, which I related to almost entirely. I wrote a whole blog post about APD here. At some point in my Internet research this lead me to understand that APD is something common in people with ADHD and/or autism.
I knew for sure that ADHD wasn’t what I had because I don’t relate to most of the symptoms, so I started to read up on autism in women and girls, and realised WOW, THIS IS ME. THIS EXPLAINS MY WHOLE LIFE. It was a real lightbulb moment.
Everything suddenly made sense to me.
I started to understand WHY I have had problems socially my entire life. WHY I struggle to follow verbal instructions. WHY I get so anxious and depressed. WHY I have self-harmed in the past. WHY I have “adult tantrums” (meltdowns). WHY I am so sensitive to things. WHY I misunderstand people all the time. WHY people misunderstand me all the time.
Autism has given me, not an excuse for anything, but an underlying reason for everything.
Suddenly other problems I had in the office job started to make sense to me.
The general environment of the office really bothered me – the temperature, size and the layout of the room.
I was always too hot and had to use a desk fan all year round. I also discovered I liked using the fan because the constant humming noise of it was soothing to me. I suppose because it was something that was always the same, and that I could control with the on/off switch.
The office became increasingly cramped during my time there so I felt like I didn’t have enough personal space. I felt almost suffocated by everyone else there. There were no dividers to break up the desks so it felt very much like I was working next to a whole group of people, which was all too much.
Noise was an issue. I’m someone who doesn’t like noisy places, but I also find silence very disconcerting. The noise levels were rarely “right” for me.
Any unexpected change in the job bothered me. I am someone who needs predictability and routine, so I could cope with some of the quieter days in the office, but as time went on, the company was doing better, and things got busier. I struggled to switch from task to task. On the quieter days early on in the job, I could cope better because I was often able to concentrate on one task at a time for a long period of time. However, as time went on this changed, and I was expected to switch task constantly. Sometimes within ten minutes I might have dealt with 3 or 4 different tasks. I found this so difficult and was terrible at juggling so many things in such a short space of time. I just wanted everyone to leave me alone so I could deal with my to-do list one task at a time.
Socially, I found working in an office a real challenge. I just couldn’t relate to my colleagues. I could chat a tiny bit to one of them if they were on their own, but chatting to them in groups was impossible for me. This has always been a problem for me. I still don’t know how to chat to more than one person at a time. The only time I can is if I know the other people very well or if I know they are very quiet (and maybe autistic) too. I’ve always had some level of social anxiety, although I realised years ago that I did not have social anxiety disorder. I had a partner in my 20s who had social anxiety disorder and we realised that we had totally different feelings about socialising. He was desperate to have a group of friends and be sociable, whereas I wasn’t interested. I was and am anxious socially, but I am happy to mostly spend time alone or just spend time with one other person. He wasn’t like this. But then he wasn’t autistic.
I also fell out with people in the office. There always seems to be at least one person in every job I’ve had that I fall out with. In the office job there were three people I had major trouble with, and a couple of others I also found difficult. Looking back, I probably misinterpreted things they said and did, and they definitely misinterpreted things I said and did. The joys of being an undiagnosed autistic in an office of neurotypicals!
The commute to the job also stressed me out to no end because I had to get the bus which were often late. Sometimes people on the bus would bother me, like someone really smelly might sit next to me which would make me feel sick, or an argument might break out which would make me feel on edge. So sometimes I would feel hugely stressed out before I’d even stepped foot in the office. I also developed a bit of a phobia of the bus driving too fast. I suffer from motion sickness and along the bus route there is one point where the bus suddenly accelerates and goes very fast down a steep hill. Every day I started to panic at the point where this happens and my anxiety would rapidly increase. I would feel very sick. I still haven’t totally got over that phobia although it hasn’t stopped me from taking the bus, thankfully.
All in all I was a nervous wreck from the minute I woke up at 6:30am to when I got home at 7pm, when I would generally just get in, cook something, eat, cry and go to bed.
Before suspecting autism, I blamed most of my problems on other things. My father had passed away quite suddenly a week before I started the job so I put a lot of my depression down to ongoing grief, even though my dad and I had not been very close.
I also blamed a lot of my problems on the people there, and in my defence, some of the people there really weren’t very nice. One obnoxious and arrogant senior associate was a bully and on one occasion deliberately humiliated me in front of the whole office. He was a true jerk, and I don’t think many people could dispute that. When I first complained about him I found out from HR that other people in his previous office had made similar complaints about him. But despite there being some truly vile people there, I knew that I also had personal issues that were affecting both my ability to do my job well, and my ability to just get on with people. Autism did seem to explain why I seemed to be a target for bullies. It was something I had experienced (albeit to a much lesser degree) in one of my previous jobs.
As well as problems at work, autism explained my poor mental health. I have had problems with it since the age of 12 when I first experienced depression and anxiety. Over the years I’ve had periods of depression on and off, but the anxiety has been pretty much constant. I’ve also had problems controlling varying levels of self-harm (during meltdowns) that go back to when I was probably around ten years-old, and I could never understand why I acted in the way I did. A lot of what I read and heard about self-harm when I was growing up seemed to focus more on teenagers self-harming because they were so depressed and people at school joked about it being something “emo” kids did. But for me that never made sense. I didn’t do it because I was sad, I always self-harmed due to feeling overwhelmed, angry and frustrated, and simply not knowing what else to do. And it was never for attention since I didn’t want anyone to find out about it and I hid it from everyone for years.
My past partners had tried diagnosing me with various things. One ex (who had been diagnosed with asperger’s himself but was in total denial about it, claiming to have grown out of it), thought I was bipolar. I knew I wasn’t because I don’t experience manic episodes. I experience extreme highs and lows, yes, but not mania. Also it was pretty obvious he knew very little about bipolar! Another partner later in my 20s said I had “anger issues”. I probably do but I know now they are a result of being autistic and bottling things up too much.
So, that was how I first began to think I could be autistic.
Unfortunately, after weeks of research, sometime in early 2017 I tried to speak to a doctor about my possibly having asperger’s and I got laughed at by him. He just said “it’s usually diagnosed in childhood” and I “just had low self-esteem”. I felt very discouraged and upset, so I forgot about it for a long time. I put autism to the back of my mind. I also had too much to deal with in coping with the full-time office job. I wasn’t in a position to leave that job for a long time. It wasn’t until I left the job in spring 2018 that I had the brain space or the time to be able to properly look into autism again.
It took me 2 1/2 years after first suspecting it before I got a diagnosis. I will write about my diagnosis process another time.
Can you relate to any of this? How did you first realise you might be autistic?