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

This post originally appeared on my autism blog: A Magical Aspie 🙂

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 people and understand 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 you hold your 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, who often have good verbal speech but cannot pick up on non verbal cues intuitively, 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 could not tell the difference and I couldn’t bear to look at all those faces. 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 autism manifests 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 properly (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.

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Diet and M.E: No, it’s not a simple cure

This is a topic close to my heart that I’ve been meaning to write about for a while. If you google “CFS recovery story” or “M.E recovery story”, you will see lots of people telling their stories and every single person says something different (and I think that’s because so many of those people actually all have different conditions). But quite a few of them say, oh I changed this and I changed that about my diet and now I’m completely better.

And so over the past few years, I’ve tried every single diet under the sun. Sugar free, refined sugar free, gluten free, paleo, high protein, “anti-inflammatory”, “autoimmune protocol”, green smoothies, broths, fermented foods including kefir and sauerkraut, supplement protocols etc etc – I read so many books and visited so many websites, because everyone has a different story and there are so many “natural health” websites dedicated to this. I followed the diets and recipes that books or doctors or other people told me to try, and none of them have helped me feel better. I tried some for just a few weeks (like the autoimmune protocol, paleo diet and low histamine diet) and they caused my stomach to bleed from the inside because I couldn’t tolerate the change in foods. With others, like the gluten free/refined sugar free diet, I did that for a much longer time and saw literally no difference whatsoever except I became more anxious and stressed when I could no longer eat some of my favourite foods which actually worsened my stomach pain and illness! I’m on the autism spectrum, and I can become extremely attached to certain foods, and have a lot of sensory difficulties around food and growing up I have learned which foods I can tolerate and which I really can’t and make me feel “vomity”. These sensory difficulties have magnified. I also have neurological stomach problems associated with ASD from birth which means the nerves and tissue in my stomach are far more sensitive to stimuli and pain, and my stomach reacts in a different way! It’s also incredibly hard for my mum to cook a lot – she is my main carer and makes all my food and is ill herself and has other difficulties with food preparation.

And it’s not just me, there are lots of people with complex conditions which might mean they cannot make changes to their diet or eat the same foods that others can, and also their own carers may struggle to cook a lot too. It’s all too easy to judge, especially in the “natural health” and “alternative health” worlds where things tend to get simplified, especially when people have complex or chronic illnesses – but it’s important to remember there’s a lot that you probably do not know. Lots of people told me and my mum that I became ill because I was a vegan at the time, but they seem to forget there are whole communities in India and other countries who eat only vegan/vegetarian diets (including the Jain community), who are perfectly healthy. Many people often want simple answers to complex illnesses, and find it hard to understand how someone could fall so ill, and so food often seems to be an easy target.

Right now I am eating healthily in a way my body and mind can tolerate, with plenty of vegetables, foods I like, and treats and dessert because food is something to be enjoyed and which brings me a lot of happiness, and my stomach is calmer (as calm as it can be, given the circumstances), and I am much happier with myself than I was with any of those diets or “healthy eating” plans. If I do make changes in the future, it’ll be because it works for me, not for someone else. I know a lot about healthy eating and I think by now, most people with M.E do too. I understand that food can be powerful, and I know that some research shows increasing protein can help when the body struggles to convert carbs and sugar to energy, so some people do go “paleo”.

But you know what? Life often isn’t as simple as that for everyone. Maybe it is for some people. But not for me, and definitely not for some other people like me. Life is complex, and conditions like these are complex, and they don’t always have a simple solution, so please do not ever feel guilt-tripped or judged if you were unable or didn’t want to try a diet you were told to try, or even if you did try it and found that what worked for other people, didn’t work for you. It’s not because you didn’t try hard enough or that you’re not strong enough – it’s because your life and condition is more complex. And if eating your favourite dessert every day is the only way you stay sane through this horrific illness, then keep doing it! Often with M.E there are days we cannot eat at all, or we have to drink shakes when we cannot chew, and many with very severe M.E are even tube fed, so just eating what we can, when we can, and enjoying it and finding happiness in it- is a blessing. Remember: no one else really knows what you’re going through and no one has the right to judge or make you feel bad when you’re sick. 💛

Breakspear medical :  the good and the bad!

It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system. Before I went, I had heard both good things and bad things about Breakspear – and unfortunately my experience also hasn’t been completely perfect, especially as time went on. I wanted to be honest about my experience so far, both good and bad, and not only report the positive bits – because it wouldn’t be truthful for the people who were thinking of going there.

My first appointment went really well. We had stayed overnight at a nearby hotel which was 2 minutes away from the hospital. I wasn’t able to sit up very much so by the time I got to the hospital I needed to lie down – they gave me a bed to lie down in until I saw the doctor, which helped a lot! Then I went to see my doctor, and she was very kind and she knew about Simon Wessley (the psychiatrist who one of the main proponents of the Chronic Fatigue psychiatric theory I.e you think you’re ill so you’re ill) and she criticised him – which was a good sign! She also knew exercise can be bad for M.E. The doctor said she suspected I had a lot of problems with my stomach, which could have been contributing to immune system dysfunction and leading to autoimmune disease.  So she suggested I have blood tests (and stool and urine tests) – I was already prepared for this – in my research I found that Breakspear do run a lot of blood tests to try to find out what’s wrong, so all three of us (my mum, martyn and I) had saved up everything we could for 6 months (and a credit card) to be able to afford the tests. These kinds of tests are not routinely run on the NHS, mostly due to cost.

It took 4 weeks for all the test results to come through – because some of the tests are really specialised:

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New Year Hopes

At a time when so many people are reflecting on the past year, and hopes for the new year, I feel like retreating into my own little bed-blanket fort. Because this year has been very hard, harder even than the years that came before. In truth I started 2016 with a lot of hope and excitement. In January last year my mum did a social housing swap – which meant I was able to move out of our old home which was on the second floor without a lift, and we moved into a beautiful new home which is much smaller and all on one floor. I was slowly getting better and I truly believed by the end of 2016, I would be celebrating New Years by going out with Martyn, that I would be back at university – that I would be able to prepare a meal for myself. That I’d be walking around in London.

Instead, this year has been even harder than the year before. I went through things I would never have imagined – I became so sick that I cannot really describe what happened to me without feeling so frightened when I think back to it. This year, my faith in healthcare was also shaken so strongly – I’ve always been a huge advocate of our healthcare system because publicly funded healthcare is a human right and a need, and of course I still am, but i could never have imagined that a section of society could be failed so badly and for so long by the health system due to political influence. I could not imagine a publicly funded trial, at a well known university (the university I was studying at!) would push me into such a state.

Around the beginning of 2016, I was at about 40% on the M.E functioning scale:

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Keeping hope when you feel broken

I’ve been meaning to write this blog for a while but it has taken a while. Thank you to everyone who is still reading and following my blog, it means a lot to me. Nowadays it is getting harder to blog, but I feel like even if I can only do something small, I want to raise more awareness of this disease, in particular those severely affected and especially in the aftermath of the recent media coverage of the FITNET-NHS trial. I also want to talk about losing the ability to communicate as I once did, and despite everything that is happening to me, trying to pick myself up.

In recent months, one of the worst things that this illness has taken away from me is the ability to communicate by talking, as I once did. Last week, my mum sat on the end of my bed and had a conversation with me, but I could not answer any questions, I could only nod. I could barely take in what she was telling me, because I started feeling incredibly unwell and needed to lay in silence. My boyfriend, after work, came and gave me a hug and asked me how I was. “I’m ok”, was all I could get out, despite my expression saying I wasn’t ok. When he kept asking me what was wrong, I couldn’t answer, I couldn’t even think of the words, and I felt like my senses were overload – in the end the next day I had to text him to explain what was happening to me.

I can type on my phone and read (with a lot of breaks), although they too take a lot out of me, but talking now puts me into a state of debilitation that frightens me. From what I’ve seen, this is a similar story for quite a few people who have M.E: that talking takes far more exertion than typing; the more ill they are, the less they can talk. Up until recently, I was speaking to a counsellor (not an NHS CBT therapist, but a private counsellor because I need someone to speak to about everything that’s happened to me). I was speaking to her on the phone for 15 minutes, lying in my bed. But even that became impossible, because I was having such bad relapses and started becoming very disorientated and confused within the sessions. During my last conversation, my counsellor, who has been practising for many years and has a lot of experience in dealing with difficult situations, including others with M.E, was in shock. She asked me “is this how bad M.E can get? Is this what normally happens? That even moving from your bed is too much, and lying flat on your bed, just talking, can make you so sick?” I told her, yes, I am a severe M.E sufferer and there are thousands in this country like me, but there are those even sicker than me.

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