Masking my Autism, how difficult socialising really is for me, and a Poem 🌸

I wrote a poem about socialising and how it has been for me as an autistic woman, which I’ve included in this post. Before that, I thought I’d talk about masking and socialising and why it can be really hard. Because I speak well and it looks as if I completely understand others and their intentions (even though the way I interpret things is probably very different to how the other person is interpreting it!) and because I can hold a conversation well, I think it’s hard for people to maybe understand just how difficult and stressful socialising can be. The worst thing is, of course, is that the more I masked my difficulties as I grew older, the more people thought that things were easy for me – that conversations and socialising came easily to me, that I was an extrovert and that I was not extremely anxious. I masked because I was told by psychologists that I just had intense anxiety, and should overcome it – so I pushed it down inside me, and hurt myself so much in the process. But the truth is I’m a very anxious bundle of panicky stress in every social situation.

Verbal communication (I.e what you say) is only a tiny part of communication. A huge amount of communication and interaction and maintaining relationships with others is down to non verbal communication (I.e everything that isn’t words). This includes your tone of voice, the way people hold their body, facial expressions, interpreting what others may be thinking when they say or do or write things, interpreting others intentions towards you, and picking up on non verbal cues to figure out what may be the “right way” to behave in different social situations. In order to communicate, non-autistic people use these things intuitively, all the time. But for people with Aspergers like me, we often have good verbal speech but struggle with non verbal cues intuitively, and so things can be very hard. I get very anxious about people’s tone of voice and misinterpret “neutral” tones, as angry or upset at me. This means I’ve constantly gone around feeling as if I’ve done something wrong and need to do something to fix it, although I don’t know what. I constantly ask my partner or my mum (because they are the only two people I feel comfortable asking), “why are you are angry at me?”, and they will just say to me “oh for the last time, I’m not angry at you!”, and I always feel upset that they say that, because I feel as if they are. I did a test to see if I could correctly interpret tone of voices, and I did very badly in it! Its easy for me to recognise a very happy voice, but everything else becomes angry or upset to me. In the absence of verbal cues (i.e someone explicitly telling me they are ok at that time and not upset with me), I feel very anxious in nearly every conversation I have, even though I don’t show it on the outside and just try to continue the conversation as happily as I can.

It’s the same for facial expressions – after my assessment when it became clear this was a problem, I was told to buy a book which basically teaches you what all the different facial expressions are. I took one look at it and got so stressed and panicky that I had to put it down. Every expression which they put as “frustrated”, “contemplative”, “subdued”, etc actually just looked as if they were all just upset and angry. I couldn’t identify these more subtle expressions, I felt confused and I couldn’t bear to look at all those faces that seemed upset. Then I flipped to the “neutral” faces and again they all looked negative! The only ones that looked ok to me were the very happy and excited ones. So I’ve learned this is who I am, that my brain works in a very simple, black and white, almost child-like way. When I see you, you’re either happy, sad or angry, and you’re either happy at me or sad and angry at me. It’s the same for intentions, too, I’m always manually trying to figure out things by thinking “ok, so what did they mean by that?”, and I work myself up into a panic by trying to figure things out. I need to do this even for very simple interactions, like “how are you?” from the postman, a friend, a relative, because how much or what do people really want to know? As an autistic woman, if you struggle with other people’s intentions, it can mean you are more vulnerable to people taking advantage of you because you can’t properly read if someone is “creepy” and that they don’t mean things literally or what their intentions are (e.g when being told things like “I like you”, “would you like a drink”), and so you end up in upsetting situations – it’s something that has happened to me quite a few times, and other friends have said to me, “it was obvious he was creepy”, but it wasn’t obvious to me. Without knowing about my autism, people have just said I come across as naive.

In society you are just expected to pick up on non verbal cues all the time. This is especially true in work situations – after talking about my experiences at the ASD assessment, I realised how you are somehow expected to behave “professionally”, know how to interact with your boss/colleagues and management in a different way to how you act with friends, understand social hierarchy and change your language to suit the situation, and navigate the workplace when there is competition amongst people. In the workplace, no ones intentions are simple because so many of them want to get to the top and will do anything to get there. I don’t really understand how to work with or interact with work colleagues at all, or management, and it caused me so much pain and anxiety, and I was constantly bullied at both my workplaces and would cry every day on the way back home and in the work toilets. You are expected to know what to wear just by picking up on the non verbal cues of what people around you are wearing – but they don’t actually give you a proper dress code or tell you why what you’re wearing is wrong. I was taken aside every day and had comments thrown at me about how I looked like a child, how I wasn’t at school anymore and should know it’s not “playtime” and that I should grow up, that I wasn’t professional (please tell me, what does it mean to be professional!?). I was so frightened of going into work because of how a senior colleague would take me aside suddenly to “have a chat”. They would ask if I had lining in my skirt or tell me that the men were talking about me. I had panic attacks every single day for two years.

I think the reason most people don’t know about my difficulties with socialising, interaction and communication is because I have learned to mask it so well. The way my difficulties manifest is through intense anxiety and confusion. I push it down inside me, and the panic and anxiety and not understanding things is still there, but I can mask it enough and from a young age have learned ways of getting through social situations (which doesn’t mean I’m coping!) so people don’t really realise. Socialising requires a huge amount of constant cognitive and emotional effort. I masked because I didn’t even know I was autistic, I didn’t even realise I wasn’t reading faces or voices or intentions in the same way as others (how would I know?!). When I was younger I mimicked socially ‘appropriate’ behaviour without understanding why or what I was doing (although not very well, judging by my difficulties at primary school), and then as I got older and my difficulties with socialising didn’t go away, I was just told I just had intense anxiety by psychologists, and taught ways of “overcoming” it, I.e by interacting in a way that covered up my anxiety and all my difficulties and differences. But masking takes its toll. When I got home from school, and even university and work, I would rock or need to be rocked to calm down from the stress or pain of it. At home, I would stim (repetitive moments to help me feel calm, like rubbing my fingers together continuously), I would constantly be in and out of A&E due to severe stress induced stomach pains. Yet on a superficial level, it appears as if I find social interaction easy. I think of it as kind of like being a sloth. Because sloths always appear very chilled and happy, so people used to think that means they love being picked up and touched, because they seemed so calm. But then they monitored their hearts and it turned out their heart rate became extremely high because they were under so much stress when humans touched them. Yet it didn’t show on their faces or bodies from the outside. It’s like that with me – except I’m not under immense stress through touching (although I can be if it’s someone unfamiliar), but just through socialising and interacting. I always feel my heart pounding so much and my hands sweating but it doesn’t show on the outside. My mum used to have to sew a handkerchief onto my school uniform when I went to reception class as a small child, because I was so extremely anxious about being around people.

I don’t think it’s completely understood why, but masking is primarily something that women with autism (specifically Aspergers) do, and not men. It seems to be because autistic women have a greater desire to fit in and to have friends, and it’s not something autistic men report they want as much. The hardest thing is because I’ve masked without even knowing it, I am now sometimes being disbelieved or people who don’t know me (and who don’t know what autism is) tell me I’m not really autistic, or that it must be mild because I appear “normal” and able to interact so well. There is a lot people don’t know about ASD and also how autism can be different in women. And that just because I can seem to do something on the surface, it doesn’t mean that it comes easily to me at all or that I don’t have difficulties and differences. But I want there to be more autism acceptance and awareness, and this is why I started my blog. I would like to write more about the wider issue of masking and autistic women in another post, and how I can learn to be more myself without being afraid and how others can help too, but for now, here’s a poem which I hope gives insight into how a conversation can feel. 🌸💛

A conversation

I want to ask you
I think it in my head a million times
But don’t say it out loud
Are you upset
are you angry
With me?

We were talking
And then your face changed a little
Your tone changed a little
I can’t read it
I can’t tell
What your tone means
What your face means

You aren’t smiling anymore
You aren’t laughing
I think it means that now
You don’t like me

I am panicky
My head hurts
My palms sweat
I want to run far away
From this place
But outwardly I smile
Try to continue the conversation
As normal – as I always do
But inside, concentrating on a million things at once
To keep the conversation going

I keep hoping desperately
That you like me still
Because I still like you
I hope that nothing has changed

Later –
I go home
I analyse what was said,
Step by step
The conversation I had that day,
What I said
What you said
What you thought
I can’t figure it out
Did I say the wrong thing?
What do I do to correct it?
I cry because
Even everyday conversations feel overwhelming
Because no one can see whats happening inside
“Everyone gets anxiety”
They tell me

What they didn’t tell me –
Is that I am autistic
That I find it hard to read faces
and tone of voice
That this has meant a lifetime
of sadness,
of panic,
of desperate confusion
of trying to hide this sadness and panic and confusion, every day
Thinking that a lack of a smile
Means anger or sadness
And thinking that a smile
Means you like me

So I keep watching, hoping
For a smile
For a sign
That we are ok.

That I am ok.

Empathy and autism: feeling too much and how friends & family can help

I want to talk about empathy because I know the public perception is that people with autism don’t have empathy. In fact quite a few people told me they were surprised that I had been diagnosed because their perception was that I was over-empathetic. Well…being over-empathetic is actually often a trait of those on the autism spectrum! I’ll try to explain how I experience empathy and emotions, and how others can help.

🌸

The first thing you need to know is it’s connected to something called Theory of Mind. Theory of mind is knowing that you are separate to other people, and that other people have their own different intentions and thoughts and emotions, which are different to the intentions and thoughts you have. It’s something all non-autistic people pick up naturally, even at a young age. But it’s something that autistic people struggle with all their life. It’s why it’s harder to read others intentions, which has meant people have said I am naive in certain situations and have not noticed things that other non-autistic people picked up on easily, as I always think my intentions are also the other people’s intentions. It’s also why I often think people are upset or angry with me even if they’re not, and feel anxious about it and worry about it a lot inside. If I feel happy about a situation, I feel so confused when others aren’t happy too, or I feel sad about something, I find it difficult to see why others aren’t sad about that too. And I often think too much, when I struggle to figure out why someone’s behaved in a certain way, which can be very exhausting.

But there’s also another part of Theory of Mind. And that is, as my ASD counsellor puts it, “I find it difficult to figure out where the boundary between the other person stops and I begin”.

The yumminess of tea + special interests

Tea is definitely one of my special interests. I could talk or write for ages about tea. 🙂 When I was at my ASD assessment, I was told “you have a very long-winded pattern of speech”. Speaking with lots of detail and talking for a long time, especially if it’s a topic of interest, is something that is common for people with Aspergers and ASD. But I stop myself from speaking in a long-winded way, a lot.

My ASD counsellor told me that a lot of women with Aspergers like me are very perceptive, but not intuitive. That means that because things are not intuitive (I.e, we don’t just “know” how to read body language or facial expressions), we make up for it by trying to observe people as much as we can with our heightened senses – so we are very perceptive at noticing differences, even if we are not entirely sure how to actually interpret it. So when I’m speaking to someone I know, I will notice tiny changes – like if their body twitches even a little bit, or their facial expression changes even a little bit; this makes me panic and my first thought is, “They are no longer happy with me, they are bored/angry/sad, I should probably not talk so much or should find something else to talk about”. Obviously this is a silent process that goes on behind my mind, but you can imagine the amount of stress and panic this causes me, because I can’t really properly interpret what people are thinking or feeling. So over the years I am very aware of how much I’m speaking, am constantly worrying and am not always sure how much I should or shouldn’t say.

But with my partner, I often realise I’ve been talking for quite a while – I do indeed have naturally long winded speech, when I’m not trying to stop myself and when I feel comfortable, especially when I get excited and talk about things that are really interesting like special interests, but also when I’m just describing things or telling him things that happened during the day, because I talk about every single detail of what happened! I often talk about lots of tiny details, rather than the general picture, as that’s what I tend to see. Recently since I became ill, I unfortunately get very tired talking a lot, but my natural speech is like this.

My partner told me that it’s important that I should be myself, and he told me that even though I don’t realise it, people do love me for who I am. So in an effort to be more myself, I am going to fill this blog with all my quirks and excitability and special interests. 🦄🌸A special interest is a lot, lot more than a hobby, it’s something that is so incredible and important, something I become completely fixated on (sometimes for a short time, so I have a series of intense interests, or sometimes a longer period of time), and which becomes, in those moments, all that I can think about. Its very hard to switch off from it. It’s an obsessive joy and also a coping mechanism for a lot of autistic people, a bright and brilliant part of their lives. Without my ongoing and new special interests and my imaginary worlds, I do not think I would be coping now. This is also called having an “abnormal intensity” and focus, and is part of the ASD criteria (although I don’t like the word abnormal). The difference between hobbies and special interests, is not about the actual interest or subject, it’s the intensity and the focus of those interests. I have a few “special interests”: tea, cuddly toys, Harry Potter, Disney, desserts, fantasy books, hair accessories, and also whatever my latest area of personal research is. I think a lot of people think only of trains when they think of ASD special interests, but that’s just one of many intense interests someone could have!

So today I’ll talk about tea!

Friendships – why are they so difficult?

Today I’m writing about how it was difficult making friends growing up – even though I really wanted friends and being around people who I liked.

When I was little, I was extremely shy and quiet. When I did speak, people would say to me “what’s that? I can’t hear you! Speak up!” because I had such a soft voice. I was generally quite different to other girls my age, but very intelligent and picked things up quickly and loved to read – so my differences (like crying, becoming extremely distressed and having meltdowns far beyond what children my age would cry for, very difficult to soothe, being extremely clingy to my mum while other children weren’t, not wanting to be with anyone else, easily startled and terrified of sensory information like noises which didn’t seem to bother other children), weren’t really picked up – until very recently when I had my diagnosis of autism.

When I did go to nursery and reception, I had just one special friend called Thomas. I remember it vividly because I think those were some of my happiest times in my life, because I had found someone who was truly my friend. I used to try to teach him Tamil – and he would sit on the bench and repeat Tamil words after me! And then he would get a bit bored and go off to play football with his other boy friends – but then I’d follow him around the playground and say “Thomas!! Thomas!!” and he would come back and sit down and play with me. Sometimes I would be so sad when he went away that I would start crying, and he would come back to play, even if he didn’t understand why I was so sad. He was my best friend. I always formed (or wanted to form) very intense friendships with people who I thought were my friends, and I think that’s one thing that has upset me so much growing up – i don’t think many “neurotypical” (non-autistic) people think the same way about friendships that I do.

I am an aspie!

Welcome to my blog! ⭐️🦄🌸

I was diagnosed as being on the autistic spectrum last week. On the spectrum, I would fall under the category known as “Asperger syndome” due to the fact I hit the usual intellectual milestones and was also always of above-average intelligence. It has been very overwhelming for me to come to terms with it, but I am also feeling very happy that I’ve found out more about myself!

I have a lovely aunt who, over the past few months, had been giving me and my mum a lift to go to and from my medical treatment for my physical conditions. My aunt also attended an extensive training course on autism. After one of the trips back from the hospital, she told my mum she suspected I was on the autistic spectrum. That even though I had physical conditions, there was definitely something else, something underneath this all.

My aunt told her that the way I reacted to everyday stress that first made her think of it, but then they also talked about my early childhood, the big differences between me and other young children at that age, social and other history all the way from when I was a baby, through school, how I was at university (by secondary school and university I was trying my best to blend in), incidents that happened at the workplace that just didn’t happen to the majority of people I knew, and also my severe physical conditions including unexplained stomach problems which started in childhood and got worse as I was exposed to stress I couldn’t handle, even reactions to medicines and foods and odd allergies and neurological / coordination difficulties since I was a child, that it all pointed to being on the autistic spectrum. My mum then told her when I was a child, I would never lie. That when other children learned early on that if they lied about something to keep themselves out of trouble, I would never do that. That it was as if I didn’t know how to. My aunt told my mum that was a classic feature of autism that is found in childhood.