How I realised I could be autistic

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?

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Telling people I’m autistic

I knew a long time ago that if I ever got officially diagnosed I would be open about being autistic. I don’t think I want to go outside wearing a t-shirt with ‘autistic’ on or anything (not yet anyway ๐Ÿ˜› ), but I’ve been open about it with family, friends, work colleagues, my skating coach, and written about it on my personal website (which has my name on, unlike this website which I write anonymously). I thought today I’d share my experiences of how things have gone so far.

Telling my work colleagues was the priority for me because I love my current job. It’s the first job I’ve ever had that I really love, but since I’ve had so many misunderstandings and fallings out happen in all my previous jobs, I knew that I needed to tell them to avoid things going wrong in the future. I work from home so I don’t actually see my colleagues much, but we do talk on the phone occasionally, which is something I don’t always find easy. I also badly needed to be able to explain to them that I’m never going to be able to take minutes in meetings. I wrote about this in this post here about my auditory processing problems. I’m hopeless at listening and writing notes at the same time. I was terrible at this at university, and it has never got easier. So, I wanted to be honest about this because I think it’s best to be honest about your weaknesses. Thankfully work have been BRILLIANT about everything. I knew they would be because I work with some kind-hearted people and I feel extremely lucky. The boss basically said what I wanted him to say, that we all need to work to our own strengths. I’m very relieved. I was so nervous when I told my line manager I was shaking like a leaf when she rang me up, but she couldn’t have been nicer to me.

Telling family was/is not particularly difficult for me either because I don’t actually have much family and only had to tell one person myself. My mum and I are very close and I’ve discussed everything with her for months and months so she has been fully accepting. Plus we are pretty certain there are other aspies in the family, even though I’m the only to be diagnosed as far as we know. My mum is telling some family members for me. I’m not sure she’s done this yet, but we aren’t a family that speak to each other very often! I’m not that bothered about reactions from distant family, to be honest, as we’re just not that close.

Friends. Now that’s the tricky bit and where things have got a bit complicated.

Firstly, the good reactions…

One friend who is also autistic has been over the moon for me! ๐Ÿ™‚ She had suggested to me a few months back that maybe I could also be autistic too, so when I told her I got diagnosed she was overjoyed! She is a friend I see at the ice rink along with her father. Telling them both has been wonderful and it has lead to lots of interesting discussions about autism. Even though my friend and I have slightly different challenges and have had very different life experiences, we still relate to each other in many ways.

As well as that friend and her dad, I also told our skating coach about it and whilst we haven’t talked about it at length, she has also been really understanding. She is definitely aware that both my friend and I learn a bit slower than most other people, so she is teaching us very gradually, which is fine with me because I am in no rush. I’ve always struggled with sports as I have some issues with my co-ordination, and so it takes me a long time to learn a new move. Also because I tend to be very black and white in my thinking, I have some days when I can do everything confidently and other days when I feel like I can’t skate anymore! There’s not any middle ground with me, and I’m glad she knows why that is now.

It’s interesting to me that it seems that figure skating actually appeals to quite a few autistic people. It’s something that the doctor who diagnosed me with autism talked to me about because it turned out that I was not the first figure skater he has diagnosed. He was saying how it’s very much a solo activity that involves a lot of repetition and perfecting each move, so he understands how it appeals to autistic people in that way. That makes total sense to me because that is definitely why I like it so much too. I’ve always said that it’s also an ideal sport for introverts because you don’t have to talk to people at the rink much unless you want to. If you’re not feeling chatty, it’s perfectly acceptable to go to a session and just practice on your own, but if you go often enough, there’ll always be some other regulars there that you get to know and can chat to for a bit if you want to. But nobody minds if you don’t. (If you want a new and challenging hobby, I can definitely recommend figure skating if you’re an introverted autistic type! ๐Ÿ™‚ ) Anyway, sorry, once I start talking about skating, I can’t stop myself!

One other friend I told has been brilliant about it and I’m very grateful for her support. She also thinks she is autistic too. I really do think that autistic people tend to find each other! ๐Ÿ™‚

Another friend who I told seemed puzzled as she initially confused it with Tourette’s(!) but once I explained things I think she understood a bit better. She was curious and asked questions, but didn’t say anything dismissive or rude. She did say the slightly frustrating thing that my autism must be ‘mild’. This isn’t something I agree with because autism is not either severe or mild. It’s not a linear spectrum at all. It’s so much more complicated than that. I think if she saw me meltdown at home, she wouldn’t then say that I have mild autism (and maybe she wouldn’t want to be my friend anymore either!), but since she clearly didn’t know what autism really was and confused it with Tourette’s, I let it slide and don’t feel that things went too badly. She’s not someone I see that often, so it didn’t bother me too much.

But there is one friend who I’ve mentioned before on here I’ve been having a lot of trouble with for many reasons. It feels like our friendship is very much over since I told her about my diagnosis. She is/was? a friend who I’ve known the longest and for many years I saw her as a my best friend, even though I’ve always known that it was not reciprocated and I was not her best friend. She is a very different character to my other friends in the sense that she is much more extroverted. I have always liked being around her for short bursts of time because she has lots of energy, she’s very funny and likes to have a good chat and we go out for nice meals together.

I first mentioned to her that I thought I might have asperger’s about two and a half years ago when I first read about how different it is in women and girls. She didn’t really comment much on it at the time, although I don’t think we talked about it in great detail. Back then I wasn’t that sure about things anyway. Then a few weeks back I told her that I had been looking into it further and I was going to have an assessment for it in the next few weeks, and she reacted in a slightly odd way, like she didn’t know what to say. Whilst I’m not great at reading faces, I didn’t get much of a supportive feeling from her. Her face kind of looked a bit angry and disbelieving. I let it slide though because at that point I hadn’t yet been diagnosed, and I had brought it up out of the blue. I figured that she just needed some time to let it sink in and maybe read up on it.

Then a few weeks later I had my assessment and I got diagnosed. That whole day was petrifying. I was shaking with nerves throughout most of the assessment and I felt faint and nauseous for the first hour or so of it because I was so nervous. I hadn’t been sleeping much for days leading up to it either so I was very sleep-deprived. It was such a big deal to me because I’d felt like I’d needed it for over two years. Because I considered her one of my closest friends, I texted her straight after to let her know the outcome. She replied with “Ooh that was a quick assessment!”. I was really upset by those words as it’s such a rude, nasty and dismissive thing to say. I also felt like she was very quick herself to make the assumption that it was a “quick’ assessment! The intense 4 hour interview and all the written assessments in the weeks leading up to it certainly did not feel quick to me! At the time though I was so caught up in the relief of the diagnosis, that I tried to ignore it and figured that when I next saw her things would be easier because I could explain in person. Thankfully the texts I got from other friends, such as my autistic skating friend were much nicer (Hers contained about 19 smiley faces which made up for it! ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ ).

We then met up for lunch, about five days after the assessment. It was a disaster.

She is someone who is excessively talkative and there have been times over the years that we meet up that I don’t feel like I get to speak very much, which leaves me very frustrated. These times used to be rarer but have become more common in recent months. I think perhaps she has ADHD because she tends to jump fast from topic to topic, often doesn’t really let me speak and tends to interrupt me. This really clashes with my way of making conversation because I like to talk about the same topic for a long period of time, and I do like to talk about my interests, but often I don’t feel like she wants to know.

Anyway I really thought that at this lunch she would be different because she knew I’d been through the assessment process and I thought she would want to make an effort to try to understand my diagnosis. I thought we were friends, so I thought that she would immediately ask me questions about it. Instead she avoided the subject for the first 45 mins of our lunch and talked at me constantly about herself and her very old relative who had just died. She then tentatively brought up the subject so I tried to explain a few things about it, which to be honest was really hard because I got the feeling like she really did not want to hear about it. I can’t remember exactly what I said to her now. Everything I said though, she responded to in a dismissive way. For example, when I told her about some of the ways it affected me in my last job, she just said “Oh well it sounded like they weren’t very nice people there anyway”. It is true that I was bullied at my last job and some people there were not very nice. But there was much more to my problems there than that. It felt like she was trying to talk me out of the diagnosis by making dismissive comments. She didn’t want to listen to what I was actually saying.

The worst thing though was that she asked me if I had deliberately answered the questions the way that I thought I should answer them, like she does when she does those silly online personality tests!!! If she knew anything about me at all, she would know that I am not a good liar. Aspies cannot lie. ๐Ÿ˜› Edit: I feel like I need to edit this because aspies CAN lie, in the form of masking, but it’s EXHAUSTING and feels unnatural. I can’t lie to save my life. When I am tired or under stress, I can’t lie or mask easily. I find it so hard to tell the smallest tiniest white lie. I could not lie for a 4 hour interview that I was terrified about. Besides, why on earth would I want to do that?! I say things like it is. If anything, I’m too honest and that is what gets me into trouble a lot of the time. So it was a pretty ridiculous question to ask, not to mention, very upsetting to hear from a supposed friend. It really confirmed to me that she doesn’t know me at all.

I was lucky in a way that I was not feeling physically well the day of our lunch anyway as I had pulled a muscle in my neck caused by the stress of the assessment earlier in the week (I have a tendency to hunch my back when I’m stressed and I did it to the extreme during the week of my assessment. It was so bad I got prescribed valium to relax the muscles!). So after spending just over an hour with her for this terrible lunch, I ended up excusing myself and going home as I was in genuine extreme pain. I’m sure our difficult lunch and all the tension she caused me made the hunching and the neck pain much worse. When I got home I had a very bad meltdown and cried my eyes out for hours.

Since the awful lunch, she has apologised by text, but blamed it all on the death of her very old relative (who I know from many past conversations she wasn’t particularly close to) and the person’s death was not unexpected either. She admitted it wasn’t an excuse, but she still tried to use that as a reason for her bad behaviour.

The whole thing has left me feeling like I don’t want to see her again, despite nearly 15 years of friendship. My trouble is I am autistic and therefore I see things in black and white. She was a friend. Now it does not feel like she is a friend. My mum keeps saying to me, maybe we could meet up occasionally and maybe eventually the friendship will naturally slowly fizzle out. But I just don’t feel like I know how to do a “half-friendship”. How can I meet up with her if I’m not sure I like her or trust her any more?

I can’t help but wonder if there is a lot of underlying jealousy going on. I have often felt with her, particularly over the last year since I’ve been happier in my life, that when we talk, it feels like a game of tennis. In the last year I got a nice new job, I took up skating and made a new friend at the rink, and I launched a new personal art website/shop. She never seems to want to hear my good news. I’ll tell her one thing, and she will come back at me with something else. Our conversations feel competitive somehow, when I don’t want them them to be, or mean them to be. They never used to be this way. They aren’t this way with my other friends. But I have been detecting a lot of jealousy from her in recent months. I don’t get it though because she has a much better job than me in many ways. She works full-time and earns much more than me. She has a much closer family than me. She has more friends than me. She has things I don’t have. She comes across as so insecure though.

Maybe I am being too hard on her. Maybe I should give her more time to adjust. I don’t know. I get that hearing someone tell you they’re autistic when you didn’t have a clue must be a shock, but I don’t get why someone would react in that way. Perhaps she knows that she has something that needs diagnosing too and she is envious I have my thing sorted. But she has joked lots before that she might have ADHD but always says afterwards that she ‘s probably just very lazy. I keep thinking, how would I have reacted if she’d told me she had been diagnosed with ADHD? I’m certain I would never have reacted with such hostility.

There is also the whole issue of masking which I think is a big part of the problem. She is someone who I definitely mask a lot around for the simple reason that she is so different to me. (I wrote more about masking in this post). So, maybe things are not all her fault. Maybe I should not be so surprised at her disbelief at my diagnosis because she has only ever seen one side of me. She’s also only ever spent time with me in one type of situation, when we meet up, just the two of us. She didn’t see me at university, at school or in any of my jobs. She’s never seen how I interact with other people, other than shop assistants and waitresses. She’s never seen me have a meltdown. Masking is helpful in some situations but overall it is problematic. I’ve been told numerous times in the past that I appear to be a very calm laid-back person on the outside, which amuses my mum to no end because she knows that I am the exact OPPOSITE of calm. I am generally a bag of nerves. ๐Ÿ˜›

Thinking about it, people used to say the same thing about my dad, when I knew what he was really like!

Whatever happens, I am grateful to have the few friends I have right now. I’m thankful too for getting some nice comments from people online since “coming out” as autistic. I hope that in time I will make new friends, particularly at the ice rink and in the autistic community in general.

Have you experienced anything like this? Were you diagnosed late in life too? How did people react when you told them you’re autistic? Did you lose any friends?

How autism affects me as an adult woman: Social Interaction and Masking

This is part of a series of posts about how autism affects me personally. I am not trying to speak about all autistic people, and I am not a medical professional. I can only share my own experiences. I am hoping to connect with others with similar experiences. Feel free to leave a comment or contact me here. See all the posts in this series by clicking here.

Recently I wrote a post about the ways in which autism affects my social communication, referring to some of the traits mentioned on this page on the National Autistic Society website. I thought I’d move on to thinking about social interaction today.

According to the NAS website people with asperger’s may appear to be insensitive, seek out time alone when overloaded by other people, not seek comfort from other people, and appear to behave ‘strangely’ or in a way thought to be socially inappropriate.

Masking

I don’t feel I can write much about social interaction without first mentioning masking. Like many autistic people, especially girls and women, I do a lot of masking, usually without even realising it. To some extent everyone wears a mask when they’re out in the world. Most people have a persona of some kind that they present to strangers or to their friends or even family, and this is a kind of mask and that mask might change a bit depending on who the person is with or to suit a situation. I don’t think anybody is ever genuinely 100% completely themselves when they’re out in public, at work or when socialising. But when you’re autistic, masking is a bit different because the goal of it is not just to fit in with certain people or into a certain situation, but to hide our autistic traits. This video Autism and Masking by Purple Ella explains masking really well. (I found it really interesting how Ella was obsessed with Annie when she was a child, as I was the same but with the Anne of Green Gables film, so a different orphan but minus the singing! ๐Ÿ˜› ).

Since my realisation that I’m autistic, and my recent diagnosis, it has really hit home how much I have masked throughout my life. I remember about ten years ago I was living in a shared house and I had a visit from a school friend of mine (I’ll call her Laura). She didn’t stay long, just long enough for a drink, a chat, and she met a couple of my housemates. After she left one of my housemates said to me I had been a totally different person when Laura had been there. He was really shocked at how different I’d behaved and he said even my voice was different. He kind of teased me about it and I remember feeling a bit embarrassed about it at the time, but also confused because I hadn’t been aware that I had been acting and sounding so differently until he pointed it out. Looking back, I feel like this was a classic example of my masking behaviour.

The consequences of masking throughout my life have been very damaging. Masking is draining and I feel it has lead to me not really understanding who I really am, making friends that perhaps weren’t always suited to me, and has contributed to numerous mental health problems.

Masking has made friendships confusing and difficult to maintain because I feel that so few of my friends have ever known the real me. Laura and I stopped speaking about two years after that house visit. Right now I’m going through the realisation that someone I’ve been friends with for nearly 15 years, I’m probably going to lose as a friend entirely because I’ve realised how much I mask around her and because I’ve been so damn good at masking around her, she quite obviously doesn’t believe my autism diagnosis. I might write about it more here at some point but currently things are too fragile.

The workplace

The place where I am unable to mask very much and I have certainly been told on more than one occasion I am insensitive, blunt, rude or inappropriate is in the workplace. It has caused me so many problems over the years. At work, it’s much harder to mask because if you work full-time then you’re there for hours every day and there’s only so long you can mask for before the fatigue sets in. Sooner or later that mask falls off. I have found that even when working part-time, if a job is very stressful or just not suited to me, then it becomes impossible to keep that mask on for very long at all. Wearing a mask is exhausting. If you can’t be yourself at least a little bit at work, you’re never going to have a healthy or happy working life. But that’s difficult when you have a tendency to be a bit blunt or accidentally inappropriate, like I am.

I remember once in one job where I was serving the public in a tourist attraction, a kid had an accident and hurt his leg in the playground. I didn’t see the kid at all but was told by a staff member I needed to ring an ambulance. I’d never had to ring an ambulance before in my life so to me this was a big drama in itself. I find any phone call a challenge, so a 999 one was nerve-wracking. When the ambulance arrived a couple of other staff members asked me why an ambulance had arrived. I relayed the story to them that a kid had had an accident in the playground. They both looked at me with angry faces and shouted at me “why are you smiling?!”. Then they walked off shaking their heads at me. I felt like such a horrible person! I hadn’t been thinking about the kid at all, and they must have taken the apparent smile on my face to mean that I was happy that a kid had hurt himself! Obviously I am not a monster and was not happy the kid hurt himself. I had just been caught up in my own feelings about having to call an ambulance for the first time, which to me was an overwhelming experience. I hadn’t seen the accident or the kid myself. Maybe if I’d seen him crying in pain or seen lots of blood I wouldn’t have smiled. I don’t know. I’m glad I didn’t see him in case I’d done or said something even worse! I hadn’t realised I was smiling until it was too late, and I hadn’t even considered what my face should be doing at that point. I was focused on my own drama.

In my autism assessment the doctor said to me that for an autistic person I have a very expressive face. I read that autistic women can be a little more expressive in the face than autistic males and that is true for me. I can sometimes find it hard to to hide my own feelings, but also apparently the expressions on my face don’t always quite match the situation or my own feelings. ๐Ÿ˜ฆ So people can mis-read my face and I think it doesn’t help that I don’t always explain things properly.

For example sometimes people seem to think that I’m showing off about things, when I haven’t been showing off. I remember when once I was talking to a colleague about something in my old office job. I can’t remember what we were talking about now but it was work-related, not very interesting and not something I cared about. He asked me a question, I answered it, then he said to me “Is this you showing off?!”. I just didn’t know where on earth he had got that from, but he must have misinterpreted something from my face or tone. I remember feeling completely misunderstood because whatever I’d been talking about, it honestly wasn’t very important to me and I hadn’t been showing off, I’d simply been answering his question, probably in my usual direct manner.

Being misunderstood is this way leads me to worry a lot about what my face is doing, or whether my tone of voice is correct for the situation, or whether I’ve expressed something in an appropriate way. This fear of my face showing the wrong thing, or of having my words misinterpreted leads to more masking or just not saying anything at all because this is a safer thing to do. Hence why I am often so quiet. It’s preferable to being told off or being misunderstood. Feeling constantly misunderstood was one of the main reasons I looked into getting an autism diagnosis in the first place.

I definitely seek out time alone when overloaded by other people. Out of all those traits mentioned about social interaction on the NAS website this one is the truest for me. I prefer to limit my time with people. I love this phrase I’ve seen and heard many times…

This describes me perfectly. There are a select few individuals I love to spend time with, but I need time alone afterwards. I’m not the kind of person who will strike up a conversation with anybody. I can’t see the point of it and don’t have the social energy for it. I probably will end up a solitary cat lady one day and I’m okay with that, as long as I always have that select few special people to see regularly. Quality over quantity! I suppose the ice rink is the only place where sometimes I can be more chatty, but generally I’m sure the other regulars there see me as a quiet person. I never stay there more than a couple of hours anyway so I get plenty of alone time afterwards. Plus it’s easier for me to chat to people at the rink because the conversation is nearly always about skating, so the conversation always interests me.

I know it seems boring but my natural habitat is being alone in my bedroom with my music, my laptop, my TV and my many collections of things. Some would call it clutter. But I love all my knick knacks, my ornaments, my cameras, CDs, DVDs, cuddly toys, enamel pins, postcards, art prints, and various other bits and bobs. I’ve always loved to collect things. Things bring me comfort. I remember Tony Attwood saying that in a nutshell asperger’s describes someone who in life has found something more interesting than socialising”. This is definitely true for me, but that doesn’t mean that I don’t like people at all, just in limited quantities.

As for seeking comfort from others, I do seek comfort from my mum a lot. I am very close to my mum these days and we talk a lot about lots of things, avoiding the topics that we disagree on. But other than my mum, and one or two friends, I often turn to things for comfort rather than people.

As for appearing to behave “strangely” I’m sure I do, but I can’t think of any specific examples right now, other than the ambulance incident I mentioned earlier. In adult life I think that the workplace is generally the place where I probably appear the most strange, and where all of these social interaction problems come to the surface. Being at work is exhausting, both mentally and physically, so it’s hard to hide your true self. I work from home now and it has made my life considerably easier, but I doubt I will always be able to. I’m making the most of it while I can.

Can you relate to any of this? What problems do you experience with social interaction? Do you tend to say or do inappropriate things unintentionally? Do people misinterpret your tone or facial expression? Do you prefer to spend time alone too?

How autism affects me as an adult woman: Sensory Sensitivities

This is part of a series of posts about how autism affects me personally. I am not trying to speak about all autistic people, and I am not a medical professional. I can only share my own experiences. I am hoping to connect with others with similar experiences. Feel free to leave a comment or contact me here. See all the posts in this series by clicking here.

For me sensory sensitivities are one of the most frustrating aspects of my asperger’s because they have greatly affected every area of my life, and yet for so many years I was unable to see how they were affecting me. I knew that certain things made me extremely uncomfortable and anxious in a way that didn’t seem to affect other people, but I never knew that what I experience is a recognised thing rather than me just being very particular and too sensitive.

In case you missed it I wrote a post about some of my sensory sensitivities as a child here.

Autistic people can either be oversensitive or undersensitive to touch, taste, light, sound and smell, as well as other things such as temperature or movement. There is a good explanation of examples of the different sensitivities here on the National Autistic Society website.

I seem to very much be in the oversensitive category for most things…

  • Loud noises or unexpected noises. Certain noises go right through me which sometimes other people don’t even seem to notice. There was a noise at my old office job from lorries parking on the road outside and leaving their engines running that hurt my ears to the point I had to cover them. It went right through me making me shudder and grit my teeth. When I mentioned this noise to the woman sitting next to me, she hadn’t even noticed it. There are also a lot of noises in our kitchen that bother me a lot, in particular, saucepans and cutlery banging together. I find any kind of metal on metal sound really grating, and at times a bit painful. I think my main issue with noise though is I find noisy social situations over a long period of time to be really really draining. Even if I have enjoyed spending time with a friend, if I have talked a lot, and/or if the friend has talked a lot, and we’ve been spending most of our time in very noisy/busy environments, it can lead to headaches and when I get home, usually either a meltdown or just total exhaustion for at least 24 hours (I’m still trying to figure out if I experience shutdowns). People with loud voices, people who shout, children who scream and the crying of babies I particularly find challenging.
  • Strong smells. My mum has always said I have an acute sense of smell and if I can smell something that I really don’t like, I tend to get very uncomfortable and I find it very hard to block it out and think of anything else. Some smells I particularly dislike are dogs (even though I find many small dogs to be very cute, the smell of them makes me want to throw up), BO (this was such a problem when working in an office!) and I don’t mean just bad BO, I mean any strong body odour in general, strong perfumes and certain foods. The plus side of this oversensitivity is I am good at telling when food has gone off when my mum hasn’t noticed!
  • Crowded and busy environments where there is lots of movement going on around me. This is something I’ve really noticed at the ice rink. As much as I love skating, this problem even affects me at the rink which is somewhere I often really love being. My enjoyment of each skating session is greatly affected by how many other people there are on the ice though. If there’s slightly too many people, or if there’s too many hockey skaters who whizz around the rink really fast, I seem to get very disorientated by their movement. It can almost make me dizzy. I often come home with a headache if it’s been really crowded, or if it has been too full of noisy kids.
  • I also particularly have a strong dislike of people walking too close behind me. I generally need a lot of personal space. At school, morning assemblies filled me with anxiety because I hated having to sit in the middle of a row with other people sitting to my left, my right, in front of me and right behind me. It made me feel surrounded, and almost trapped and like I was being suffocated by people. It made me feel disorientated because I didn’t like the feeling of people just being there all around me. I always hoped that I would be sat at the end of a row because that made me feel slightly better. I could really relate to the quote at the top of this page on the NAS website by actress Saskia Lupin as she experienced a similar feeling at school.
  • I’m the same when it comes to personal space whenever I visit cafes or restaurants, I can’t stand it when I have to sit at a table that is right in the middle of the room especially if the tables are too close together. Some places are worse than others though. If the place is very spacious and has a really high ceiling, I tend to feel better. I am forever wishing Wagamamas had more individual tables though – those awful long benches are not autism-friendly! (and it’s so annoying because I love their food!) When eating out, if a place is busy, I will always choose a table that is tucked away to the side of a room and as far away from other people as possible. Although I also do this so that I can hear the person I’m with better.
  • Sometimes I can cope with crowds and noise better, specifically, when I go to gigs or concerts. Music has always been a big interest of mine since my teens and I’ve been to many gigs since I was 15. I know exactly what to expect at a gig. I know that the support band will be on at 8ish and the main band will be on at 9ish. Usually if I’m at a gig, I’m there because I generally get quite obsessed with bands. I get so overexcited about seeing a band that I love live that I am able to concentrate on my excitement of hearing their music and seeing the band I love on stage. I can’t say I like being surrounded by so many people at gigs, and some gigs are worse than others. I have had a couple of bad experiences, and one in particular where I got far too anxious by the huge crowd as soon as I walked into the room, and I had to go straight home. Sometimes I’ve also been too anxious to go to the gig in the first place as I haven’t been able to leave the house. I also once went to a venue that had an alarmingly low ceiling that made me feel extremely anxious. Generally though, gigs are something I can manage and enjoy. Live music is the best. ๐Ÿ˜€ I noticed that Georgia Harper wrote something about her experience of live music recently on her blog, so it seems I’m not alone in my ability to cope with it, despite my general intolerance of noise.
  • Heat. I live in the centre of the UK so it gets really humid here at times. I like summer days if I am somewhere really open like the seaside where there is a sea breeze. But, I am really intolerant of heat and warmth when I’m indoors. When I worked in an office I had to use a desk fan nearly all the year round when everyone else seemed to be freezing! When people turned off the air conditioning I wanted to cry because I could feel the room heat up instantly. It would get stuffier and stuffier, and the air would start to smell stale to me. It was like I could suddenly smell everything in the room, everybody’s body odours, lunches, aftershaves etc… My anxiety would increase so fast, it was horrible! It didn’t help that it was a very small, overcrowded office and I wasn’t sitting by a window. I was, however, sitting by the door, so I would disappear out to the toilets or the stairwell for “fresh air” as often as possible!
  • Motion sickness. I hate travelling in cars for more than about half an hour because I start to feel sick and I can’t travel by car in the countryside down winding country roads at all. Buses I can cope with a bit better as I’m used to them since I don’t drive and the bus journeys I take don’t tend to be very long and I know the routes I take very well (although I do have trouble with the unpredictable noises and smells on the buses) . I also don’t do rollercoasters. I have been on some very small rollercoasters in the past because of peer pressure, but I would never go on a big one in a million years. I also notice mild problems with my motion sickness when ice skating backwards. I am slowly getting more used to it, but it hasn’t been easy because it does sometimes make me feel a little bit sick, particularly when skating backwards in a straight line when I can’t see where I’m going. Skating backwards on a curve is easier for me though as it’s easier to look where I’m going and so I feel less nauseous.
  • Touch. I have always disliked the feeling of a lot of products on my skin. It took me until my late 20s to start wearing any foundation on my face and I only started because my partner at the time kept commenting on how shiny my face looked and teasing me for me. I got self-conscious about it so after that I started wearing some foundation and powder. I never wear very much at all though, just enough to look a tiny bit less shiny! I also hate the feel of body lotions and moisturisers and I do not like putting on sun protection, although I do put that on because I know it’s important. I hate being sunburnt, and these days sun lotions available do seem to be much less greasy and gross than they were when I was a child. Those dry spray ones are particularly great! I do also put on hand cream at night-time these days although I’m not keen on the stuff at all. If I don’t use it though my hands get very chapped and sore.
  • Light. I can’t go out without sunglasses for much of the year. I also hate places that are really brightly lit because they give me headaches. I once worked in a glasshouse at a botanical garden and on bright sunny days, I’d get an intense headache and severe pain behind my eyes. At the time I had a suspicion it was caused by the harsh sunlight but I didn’t know for sure. I couldn’t understand why it only affected me and not my colleagues. Some of my colleagues had hayfever at the time so I used to blame it on hayfever too. But in truth I only get very mild hayfever symptoms each year so I knew that wasn’t really the cause of my headaches. Now I realise that I just needed to wear sunglasses in that job, but I don’t think my boss would have actually let me wear them when I was serving customers (unless I’d been able to disclose my autism when I first applied for the job, perhaps).

So I think those are my main sensitivities. It’s easy to assume that someone like me is being a fusspot, being overly particular and too sensitive. This is how my family and many other people in my life always viewed me. It was a big relief and a confidence boost to find out that sensory processing issues are all actually totally normal for an autistic person.

I remember watching this video interview about how The Guardian writer Laura James found out she was autistic in her 40s after having a meltdown in hospital and I related very much. I had a bit of a mini meltdown when I had to go to hospital for a DVT years ago. I remember that I could not stop crying but at the time the male nurse just thought I was being a bit of a drama queen. Now, thankfully I have one of those Autism Alert Cards in my wallet so if I ever have to go to hospital again, at least people will know I’m not being melodramatic and will, hopefully, understand my needs better.

I hope this post has been helpful. What sensitivities do you experience as an adult? Are you over sensitive to things or undersensitive?

How autism affects me as an adult woman: Differences between my panic attacks, meltdowns and just being upset

This is part of a series of posts about how autism affects me personally. I am not trying to speak about all autistic people, and I am not a medical professional. I can only share my own experiences. I am hoping to connect with others with similar experiences. Feel free to leave a comment or contact me here. See all the posts in this series by clicking here.

Please be aware that this post briefly mentions self-harm but not in any great detail, however if you are feeling vulnerable and find the mention of self-harm to be triggering, please do not read on. Contact The Samaritans if you need urgent emotional support.

The difference between panic attacks and meltdowns was something that was mentioned briefly at the end of a Q&A by Katy of Invisible I and it got me thinking that I’d like to write something about my own experiences of them. In the past I have frequently confused them, as well as confusing them with times that I’ve just been very upset, but I have got to a point where I feel I now understand the differences.

I have had a lot more meltdowns than panic attacks during the course of my life. I did not experience my first panic attack until the age of 23 so I cannot speak of any experience of panic attacks as a child or as a teenager. I also don’t have many clear memories of meltdowns as a child so I can only really speak of my experiences as a teenager or adult. That said, I think my experiences of meltdowns as a child were probably fairly similar to how they are for me as an adult. Meltdowns aren’t the same as tantrums (although they can look like them), so they aren’t something you grow out of.

Panic attacks

According to the National Autistic Society around 40% of autistic adults have symptoms of at least one anxiety disorder of some kind at any time, compared with up to 15% in the general population. 40%!!! Many people with anxiety disorders suffer from panic attacks.

I have been diagnosed on various occasions with an anxiety disorder, but I’ve only had three or four panic attacks in my life, so I’ve been lucky in that sense. Anyone who has had one knows that they are truly horrible and terrifying! I feel very sorry for anyone who experiences them regularly.

For me the symptoms of a panic attack are:

  • Suddenly being short of breath and breathing very fast
  • Feeling like my heart is racing
  • An intense feeling like I am dying or having a heart attack. This has lead on two occasions to me ending up in A&E in the middle of the night because I genuinely believed I was dying
  • Going very cold, clammy and sweaty
  • Going deathly pale (even paler than I usually am, lol)
  • Feeling very weak and having to sit down
  • Extreme numbness and tingling in my hands and last time I had a panic attack, this numbness extended all the way up my forearms too
  • Feeling like I’m choking and my throat is closing up
  • Ringing in my ears. I have only experienced this symptom once with my most recent panic attack and it was very sudden, intense and frightening as I was struggling to hear my mum speak to me. That only made the panic worse because I thought I was going deaf!
  • Feeling exhausted and emotionally fragile the following day

One thing I’ve noticed with panic attacks for me is they have always happened very late in the evening. I don’t know if that is a common experience, but that’s what tends to happen with me. Each time I’ve had one, I’ve been alone when they started, often I’ve been trying to get to sleep at the time they start.

Since I have experienced very few panic attacks in my life, I’ve not yet been able to understand exactly what leads to them. My most recent one was last year and it was not at a particularly stressful time in my life, so it felt like it really came out of nowhere and took me by surprise. So I still have a lot of confusion about what my panic attack triggers are.

Meltdowns

If you aren’t sure what a meltdown is, this video by Purple Ella explains them very well and she also gives her suggestions on ways to cope with them.

Meltdowns are really very different for me from panic attacks. Before I knew I was autistic I either confused them as being some kind of panic attack or I referred to them as โ€œanxiety attacksโ€, but since I started reading up on autism 2 ยฝ years ago and got my autism diagnosis I understand them better now. It’s clearer to me that “anxiety attack” isn’t an appropriate name for what I experience because anxiety is not actually the main emotion I feel during or leading up to a meltdown. Feeling overwhelmed is probably more accurate.

Meltdowns are also very different for me to just being very upset about something when there is an obvious trigger or triggers that would make any person upset, like being upset after an argument or a break-up. They’re different for me as well to persistent bouts of crying I’ve experienced due to depression or grief.

The key to understanding my own autistic meltdowns is the word overload. Meltdowns for me seem to be the result of a gradual build up of emotion, stress or pressure, not of a single specific upsetting trigger, although that said, a single trigger can in some cases be the final straw if lots of things have gradually gone “wrong” (e.g. not to plan or not what I expected) or if things have overwhelmed me. My meltdowns happen after an accumulation of different things. They can occur from being too busy for too long or as strange as it may sound, from just being outside in the world too much for too long, dealing with too many people, too much noise, just too much of everything!

This accumulation can be gradual over a day, a week, several weeks or even several months. There have been a couple of years when I’ve barely had any meltdowns, but there are have a lot of years when they have been a regular occurrence.

Meltdowns don’t give me the sense of panic and โ€œOMG I am dyingโ€ feeling that a panic attack does. If anything the feelings I experience during a meltdown are more to do with anger, frustration and feeling like my brain simply cannot take ANY MORE OF ANYTHING! EVERYTHING JUST NEEDS TO STOP!

I am an extreme introvert and I need a lot of time to myself at home to be quiet and recharge, and if I don’t get enough of that, a meltdown may become imminent. For example, thinking back to when I worked full-time, if I had had a really busy or stressful week of work, followed by a weekend of other personal stresses or too much socialising, particularly if the socialising had been somewhere very noisy and/or busy or with someone who is overly talkative or with people I didn’t know very well (e.g. going to a wedding, for example), or if the week had also involved some stressful travel, things tended to pile up in my brain and get too much for me very quickly.

I have also experienced meltdowns after just one day at work that has been very full-on. There were a couple of very bad days at my receptionist job when events went very wrong and I had to deal with complaint after complaint from customers. These days triggered a total meltdown when I got home the second I got through the door.

Like panic attacks, meltdowns nearly always only happen to me when I am alone, but unlike panic attacks, they can happen any time of day. I did once or twice experience a meltdown in front of my ex-partner (after which he decided I had โ€œanger issuesโ€ because I punched the sofa), and another ex (who decided I was bipolar!), but generally they have happened to me when I’m alone. My mum has seen me have regular meltdowns but she’s only really seen the crying side of them. When it comes to the anger I experience, that is something I tend to mostly be able to suppress until I am completely alone in my bedroom.

For me the symptoms of a meltdown are:

  • Uncontrollable crying that goes on and on for a very long time
  • A feeling that I have lost control, both physically and mentally. Similar to panic attacks, I usually feel very weak and if I’m not sitting down, I usually fall to the ground i.e. usually to my bedroom carpet
  • However, despite feeling physically weak I also feel very agitated and tend to have to move my body around a lot. I tend to clench my fists and am not be able to sit completely still. It’s like my body doesn’t know what to do with itself or how to cope with all the emotion.
  • Intense and sudden anger and a desire to hit things. This is the scary part of the meltdown for me because it often results in me throwing things around my bedroom or me hitting or punching things. Just to clarify, I would never ever punch another person! I do feel I have a small degree of control over what I take my anger out on, and it is either things or myself…
  • A strong desire to self-harm. I often manage to suppress this urge and these days I only ever self-harm very very mildly if I do at all as I do not want any more scars and I have not self-harmed seriously for nearly 15 years now. I don’t feel comfortable going into details of how I have self-harmed over the years as it can be triggering for people. These days I have mostly managed to control it though and I have trained myself to punch pillows or hit something else soft when this urge occurs.
  • After I eventually stop crying, I feel physically exhausted and unable to do very much at all for the next few hours, sometimes not for the next 24 hours, depending how bad it was. I will usually just lay around quietly in my bedroom for a long time and maybe listen to calming music, watch something on TV or have a nap.

Weirdly, despite the resulting exhaustion, unlike with a panic attack, my mood can improve relatively quickly when the meltdown is over. It’s almost like I just have to get something out of my system, let it all out, and then I feel kind of okay again. It’s almost like my body’s way of recalibrating my emotions. They do leave me physically drained though and I definitely crave several hours of alone time after they happen. I also have noticed that I experience them in waves, so I may have a bad week where I’ll have several, but then the next few weeks I won’t have any at all. It does depend on my situation at the time though. When I worked in the office job I could not cope with, I would have a meltdown almost every single day when I got home, as well as occasional mini ones in the staff toilets.

This hasn’t been an easy post to write but I hope it is helpful in clearing up any confusion for people, but please don’t take my experiences as the norm because every autistic person is different.

Do you experience panic attacks and/or meltdowns too? Have your experiences been similar or different to mine?

A few links:

Just yesterday I saw this article about another woman’s experiences of meltdowns on the NAS website, which seem to be very similar to my own and it’s worth a read. She also writes about shutdowns which are something I’m still unsure if I experience/how I experience them. Maybe I will try to write about them sometime.

For help managing panic attacks: https://www.nopanic.org.uk/panic-attack/

Further info on meltdowns: https://www.autism.org.uk/about/behaviour/meltdowns.aspx

The Calm Harm app may also be useful to anyone needing help resisting the urge to self-harm: https://calmharm.co.uk/

Useful Links: Autism in women and girls

I’ve compiled this list of links which I will also later add to the main new Links page on this website. I hope you find them helpful. Let me know if you can recommend me any others!

Videos:

What is autism? This short animated video by the National Autistic Society from 2014 is not female specific, but it’s my favourite general introductory video about autism that I have found so far. It explains the traits very concisely and the little characters are really cute!

“Aspergers in Girls” – a lecture by Tony Attwood This one is a must-watch. I only wish it could have gone on for longer!

“Copy & Paste – Hidden Asperger’s – Girls with Asperger’s by Niamh McCann (TED talk)

“Inside the UK’s only school for autistic girls” – Channel 4 short documentary

“What women with autism want you to know” via Iris

Invisible Diversity: A story of undiagnosed autism by Carrie Beckwith-Fellows (TED talk)

Autism in Females by Katy of Invisible I

“Through our eyes: Living with Asperger’s (Documentary)”

Unofficial lists of autistic traits in girls and women:

These are unofficial in the sense that they are not used in diagnostic criteria, but are traits that have been noticed by experts in the field.

Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome

Female Traits by Rudy Simone, taken from her book “Aspergirls”

Articles:

How do women and girls experience autism? From the NAS website

“Is autism being missed amongst women and girls?” (BBC article)

“It all made sense when we found out we’re autistic” (BBC article)

“Autism in Women” by Eloise Stark

How autism affects me as an adult woman: Social Communication

This is part of a series of posts about how autism affects me personally. I am not trying to speak about all autistic people, and I am not a medical professional. I can only share my own experiences. I am hoping to connect with others with similar experiences. Feel free to leave a comment or contact me here. See all the posts in this series by clicking here.

According to the National Autistic Society website, people with asperger’s may struggle with various social communication problems, including tone of voice, facial expressions, jokes and sarcasm, vagueness and abstract concepts.

Sarcasm is something I struggle with. I know someone who uses a lot of sarcasm in her humour and it has taken me many years to adjust to it and work out when she is joking. Even in recent years there have been times when she’ll say something and I’ll have to really think through what she has said and I wonder if she meant it?! I’m not saying I never get sarcasm, and I can be sarcastic myself at times too, but generally it’s something that tends to confuse me and I tend to avoid using it.

I’m not sure to what extent I struggle with tone of voice, but then I suppose that I must do to some degree, otherwise I wouldn’t miss the sarcasm in the first place! Generally I am fine at interpreting tone of voice for extreme moods like happiness, sadness or anger, but perhaps not so much for in-between emotions.

As for jokes, I like to think I have a good sense of humour, and I certainly haven’t had trouble finding comedy programmes I enjoy watching over the years. Specifically I love The Office (US version), Parks and Recreation, and I love a lot of classic British comedies like Fawlty Towers, Father Ted, Blackadder, A Bit of Fry and Laurie, and I LOVE Mr Bean! (Not that there’s any verbal humour in that!) But I still seem to miss jokes in real life sometimes when people try to tell me funny stories. Maybe this is largely due to my processing problems . I don’t know. It has lead to a lot of awkward moments at times when I know I’m meant to laugh and I tend to just look confused. Either that or I nod and smile or laugh along anyway because I know it’s polite. Things are generally easier though if I know someone better and I am more used to their personal sense of humour.

There are a few things that aren’t mentioned on that list on the NAS website that I struggle with, including metaphors. I’m not the biggest fan of metaphors. I do use some, as many autistic people do, but it takes me a long time to learn each one and remember how to use it in a particular context. When I hear or read a metaphor, my mind seems to get stuck on imagining the literal meaning, many of which are funny images! If I am not familiar with the actual meaning of the metaphor, I tend to have no idea what the person is talking about. Occasionally I can guess the meaning but that’s not something I can do quickly. Not all metaphors are a problem though because some of them get used so much in everyday life, I’ve learned to understand them. Some of them are a piece of cake (Yum!). ๐Ÿ˜›

This brings me to one of the main things that lead me to suspect I may be autistic.

I tend to take things literally.

Obviously this is linked to sarcasm and metaphors, but it also results in other problems.

My selective mutism at school as a teenager, I put down largely to the fact that I took words from a teacher who told me off in Year 7 too literally. She rather aggressively told me to be quiet and shut up, so I did, completely. But I didn’t seem to realise that that didn’t mean I wasn’t allowed to speak at all. It took me years to get over that.

When a work colleague says to me โ€œI’ll call you in two minutesโ€. I always think that they must mean two exact minutes. But apparently for many people two minutes can mean anything from about three minutes up to around ten minutes! If they didn’t mean two minutes then why wouldn’t they say something more accurate, or even say โ€œI’ll call you in five to ten minutesโ€ (although, thinking about it, that would make me assume they’ll call me in 7.5 minutes!). I suppose I just wish when people say two minutes, they mean it! I tend to be very obsessive and precise when it comes to time though.

When I thought about it, I realised I’ve had problems related to this issue of taking things literally my whole life. I know that I am very matter of fact in my speech and this has often lead to me making mistakes in conversation, like oversharing to the wrong people.

It took me years to realise that when someone asks you “How are you?” you’re not meant to say how you actually are. You’re meant to say something along the lines of “I’m fine thank you, how are you?”. When I was younger I would usually forget to ask the other person how they are and I would sometimes go into far too much detail about how I actually was. This was OK if I was in a good mood, but if I wasn’t and I immediately told them about my stomach upset or whatever, it would, unsurprisingly, send people running away from me! ๐Ÿ˜› I know how it all works now thankfully, but I still slip up occasionally if I’m tired or I forget, like the time when I worked in a corporate office and I accidentally told one of the bosses who I barely knew, when he asked me how I was, that I was worried because my friend had appendicitis(!). He was a bit lost for words, said something like “oh dear, that’s a shame”, and promptly stopped talking to me! My brother has always teased me that I forget who I’m talking to sometimes. I don’t always remember which things you are meant to tell which people. Hierarchies confuse me and often I don’t realise I’ve made a mistake until it’s too late.

Another difficulty I have is I’m really bad at explaining things verbally and telling anecdotes. My brother also used to take the mick out of me for this when I was younger! (Aren’t brothers kind?!) I have sometimes offended people by accident because I haven’t explained things properly and they have made assumptions about what I was trying to say and misunderstood me.

When it comes to facial expressions I’m not really sure how good I am at recognising those. I once tried doing an online test where you had to guess the mood of the person from photos of their eyes and I did well in that test. I discussed the test with the doctor who assessed me for autism, and he agreed with my theory that it was probably because crucially there was no time limit on the test. In real life when people pull a facial expression it may only be for a fraction of a second, which can easily be missed. Perhaps the fact that I’m not overly keen on maintaining eye contact for too long may also account for me missing facial expressions at times.

A GP once also told me I tend to lip-read a lot, so maybe I’m too busy lip-reading sometimes to notice subtle clues in someone’s eyes. I don’t know if lip-reading is common in autistic people and I’m not sure I’m even very good at it, but perhaps I lip-read sub-consciously because it’s preferable to staring in a person’s eyes all the time. Are there any other autistic people out there who lip-read a lot? Let me know if you do! I strongly suspect this is partly why I have trouble with phone calls.

As for vagueness and abstract concepts, it’s hard to think of specific examples for this. In my autism assessment I was asked an open-ended question, but it was a pretty simple one and whilst I felt inside like I wasn’t completely sure how much detail I was meant to go into, I managed to answer the question relatively well, in quite a neurotypical (non-autistic) way. I know from past experience though that vagueness is something that tends to confuse me.

At work, I need people to be direct in their questions or instructions as I’m bad at filtering out all the irrelevant details they’ve told me I don’t need to know. I used to get so stressed at my office job when people would come to my desk and give me vague and complex instructions and not get to the point. They’d tell me endless details about how they needed my help with their project, when all they really needed to say was something simple like “Could you put this data into a spreadsheet for us?” and I would have been fine!

My matter of fact nature has meant there have been times at work when I’ve said something like it is and people have called me blunt. I’ve been caught out even with friends, when I’ve said something like it is, not meaning to be rude, but realising later on that perhaps I didn’t phrase things well. I’ve fallen out with a lot of people over the years because of this.

Another of my main problems with social communication though is that I don’t know how to communicate in a group of people and this has been difficult for me for as long as I can remember. Even when I was four years-old I’d chat to people on their own quite happily, but in a group, even of three people, I’d often go very quiet, I’d come across as very shy and I’d look like I was “taking everything in” .

For a long time I assumed I must have social anxiety disorder, but then I knew someone who had been diagnosed with social anxiety disorder, and it became apparent quickly that our attitudes to socialising were totally different. He badly wanted lots of friends and to go out more, but was too anxious to try, whereas I didn’t want to try. I would much rather stay at home a lot of the time (hopefully with some cats or other animals in the future!) or go out to places either by myself, or with individual close friends who I know well and who I trust. I’m happiest that way.

When I’m talking to someone one-to-one and I get on really well with the person, and we’re in an environment where I feel relaxed, it’s likely I’ll talk quite a lot and I’ll often have to stop myself from going on about the same things (currently ice skating and autism, my mum says! :P), but in groups I am a different person. I get totally lost and have no idea what to say, and over the years people have told me I appear “overwhelmed” or “confused”. Usually I end up getting so tired in group social situations that I completely zone out. I blame a lot of this on my processing problems, because I struggle to keep up with group conversation, particularly very fast conversation. It doesn’t help that most group social situations happen in noisy environments like pubs or restaurants. I usually get headaches too.

But another aspect of the problem is that it seems to me that it’s just very difficult to get to know people when you’re in a group setting. I admit, I can find group social situations boring. I like to get to know people properly and find out what their special interests are and what makes them tick, and I think you can only really do that if you speak to them one-to-one. People often seem to be a bit more more fake when they’re in groups and there’s often much more small talk which doesn’t really interest me.

That’s not to say that people on their own are always going to be open and honest, and I’ve learned that the hard way. I’m not always the best at judging people’s characters

In my office job, there was a new woman who initially I quite liked and I thought that she liked me too because she invited me out to lunch with her one day. Nobody had ever invited me out to lunch from that office because most lunchtimes I left the office and went to a quiet cafe because I needed some alone time. Also by that point I had been at the job for over two years and it must have been evident to most people in the office I was very miserable there, so most people didn’t speak to me much/I didn’t speak to many people. But I had warmed to this new woman as she seemed cheerful and kind, so I figured I’d give it a go. We got on really well during our lunch and I did what I often do when I feel like I’ve made a potential new best friend(!) and get way too overexcited, I talked and talked and talked and overshared. It backfired horribly.

She had asked me questions about various people in the office and I had answered them. I wasn’t nasty about anyone, and I simply answered her questions honestly, including explaining why I had trouble with some people in the office. As I said earlier, I tend to say things like it is and I tend to be brutally honest automatically. When we got back to the office after lunch, I went to my desk, and I heard her relay nearly everything I’d told her to another woman in the office who I didn’t particularly get on with, and she knew we didn’t get on. I couldn’t believe it. It seemed to be all some kind of trick or she must have been someone who relished stirring up trouble. I thought she had been genuinely bonding with me, but it was all fake and I completely misjudged the situation. I even heard the woman I didn’t particularly get on with do a little “yay!” in celebration because she found out I had handed in my notice that day. At that point, I didn’t care about her reaction as I was so desperate to leave that awful place! But I had a meltdown about things when I got home. It wasn’t the first time I’d been conned into thinking someone was being my friend.

I think that it’s partly experiences like this that make autistic people want to stay quiet and stay at home all the time. I’m always afraid of messing up and telling the wrong people the wrong things, or being too honest. But, I’m tired of being afraid of being myself all the time, and I am hoping that now I know I have asperger’s, things might get easier in time. Well, they certainly already have in my current job and I’m starting to feel more relaxed at the ice rink too, so I’m feeling more hopeful for the future.

I will leave it there for today, but would love to hear from people who may be able to relate.

Can you relate to anything I’ve mentioned here today? What troubles do you have with social communication? Do you struggle to get sarcasm? Or metaphors? Do you have difficulties with oversharing too?