Tag: authenticity

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Autism wellbeing

Autism and Self-Care

In the same way that we show kindness and compassion towards others, it is important that we show ourselves kindness and compassion too.

During times of stress, or when we are feeling fragile, struggling, or overwhelmed, it can be easy to give ourselves a hard time, or tell ourselves to toughen up. I often feel that society tells us time and time again to “just try harder”. And time and time again, I keep doing more of that thing that wasn’t working for me – but even more so! I don’t have enough hours in the day to fit everything in, so I stay up later. I don’t have enough energy to even take a shower, but I’ll sort out washing my son’s mountain bike. I keep going, holding on to the false belief that it will somehow make me stronger and better able to cope.

However, resilience isn’t built by doing the thing that hurts you even more so that you get used to it! All that does is teach you to put up with harmful things you should actually be avoiding.

Like many autistic people, I experience sensory information like sound and smells in a different way to many typical people. Some autistic people have difficulties processing how we feel – our sense of interoception may be muted, or alternatively, over-responsive and we can feel bodily sensations (hunger, needing the toilet etc.) and emotions in a less or more intense way than other people do.

I am an ‘under-feeler’. I often don’t know what it is I feel – I’m sure there is something going on but I can’t say what or where. On an off day, if I am lucky I have a general sense of ‘meh-ness’ or that life is ‘probably not ok’. When other sensory input is bombarding me, my interoception weakens further.

Many of my senses are affected in a slightly bizarre looking way. My visual processing can go haywire and I lose chunks of my vision because it’s too noisy. Or something very upsetting happens, and rather than feel sad, I feel seasick when I change my walking pace or direction. The issue is with my neurology, my brain is processing sensory information differently. It is not an issue with any of my sense organs.

All of us experience the world through our senses. This includes how we see, hear, smell, taste and touch the world – as well as how we know where our bodies are and how they are feeling. To function at our best, we need to be in what is sometimes referred to as the “just right state”. This means that our brains and nervous systems can receive, organise and understand sensory input and respond to it in a regulated way.

We all need different amounts of input at different times. Many autistic people need more sensory information or less sensory information than other people typically do in order to become, or stay regulated. Emotional and sensory regulation is about doing what we need to do to get the balance just right. For me, this is the fundamental principle of self-care. Unless I’m in an ok place to start with, there is no point attempting any more sophisticated self-care techniques. The fantastic thing is most of what we can do to regulate ourselves is very straightforward.

If we feel hyped-up or over-stimulated, we may need to calm ourselves. If we are feeling lethargic, flat, or floppy, we may need to do something energising. Regulating ourselves is part of our daily lives for most people and often we don’t even notice we are doing it. If I need to do something a bit nerve wracking I’ll instinctively take a deep breath first. If I need to unwind after a busy day, it feels natural to run a warm bath with some of my favourite scented bath oils. When I want a pick me up, I’ll enjoy the stimulating effect of inhaling the aroma of my mid-morning cup of coffee.

We are also quite natural at co-regulation too. This is when we help each other regulate ourselves. As parents we are often attuned to our children’s needs – I may recognise my son’s distress before he does and act in ways that helps him to regulate himself – whether that’s a hug, or a warm drink, or a wrestle.

I firmly believe that self-care is a disposition rather than a technique or approach that can be got out and used when required. It’s an attitude and a way of living. However, I haven’t always taken good care of myself. I learned the hard way and I struggled for years and used all sorts of unhelpful and harmful ways to regulate myself and cope with the inevitable stresses and strains of life.

As an autistic person I experience the sensory processing issues I described above. I also experience some of the other common experiences that autistic people have:

  • My world feels chaotic and confusing as my processing of it fluctuates daily; depending on the environment, my health, the weather, my mood and how much I have going on.
  • I seek consistency and order so that I have something solid to anchor myself to. Frequently I find the neurotypically biased world we live in doesn’t understand or offer me this stability, so I have to create my own.
  • I seek clarity through using logic and by taking things literally – I expect my honesty to be replicated in others – sadly that may not be the case!
  • My brain is always consciously working out what to do. It can be tricky to pack any more processing into it. It’s easier to rely on learned routines, set pieces, and organisation.
  • My body is always waiting for the next bombardment of sensory pain. If I shut it off I have to stop relating to everyone and everything. If I stay alert, I risk getting hurt.
  • Filters and hierarchies – what are they! I am open-minded, inquisitive and fascinated by everything – but dare not ask in case it’s the “wrong” question.
  • I spend a great deal of time masking. This means I have more opportunities, I’m taken more seriously, I look more normal and so get treated better. It also means I don’t get my needs met because no one knows my struggles. No one answers my questions. I make my body behave unnaturally in order to not upset people. Basically, I encourage my dysregulated state rather than using self-care. When people tell me to just be myself, I feel relieved – then realise they often mean “be yourself – but not like that!”
  • I get immense joy and healing through my senses and feel blessed that I experience things other people may miss.
  • I can focus on my interests with incredible intensity and commitment.
  • I see patterns, trends and details others overlook or filter out.
  • So long as I am allowed to experience it this way, my world is big, fascinating, ever-changing, and always full of wonder.

I frequently feel that I miss the things that many neurotypical people intuitively understand. I have always felt that way. I also feel that autistic people intuitively know what they need to do to regulate themselves, cope with the ups and downs of life and engage with the world. These things we intuitively know may not look very neurotypical. They may even be misunderstood, pitied or mocked. Perhaps they aren’t even considered self-care, simply because they don’t always look like a neurotypical person’s self-care. But my interests, and my sensory connections to myself and the wider world are my self-care. I have learned to play to my strengths. My autistic strengths.

At times of increased demand, an autistic person’s routines, structure, and self-care and regulation can include an increased need for order, timetables, questioning, and repetitive behaviours. This is not a sign of regression; not coping; or ‘becoming more autistic’. It is a similar response to everyone else’s and is driven by the autistic person intuitively understanding what will help them cope. Most people do more of whatever it is they do to cope in times of need. Whether that is writing more lists, biting their nails, hyper-focusing on a hobby, bouncing up and down, rearranging their CD collection in order – or whatever.

Fostering an attitude of kindness towards ourselves is good for our wellbeing. It can become a good habit if we practice it regularly. I had to learn how to make a habit of self-care. My default used to be self-hate. It’s not surprising when you have grown up in a world that is biased towards neurotypical people; that has increased exponentially in terms of the sensory information all around us every day; that doesn’t believe you, or thinks you are ill, disordered, broken or wrong when you try and explain how it genuinely is for you. A world that assumes you are deliberately doing what you do just to annoy everyone else. Surely an intelligent person like Emma can’t be that stupid.

But I intuitively knew I needed to self-soothe. I needed to find peace and calm. I needed to direct my intense energies somewhere. And for many years it was hit and miss. I accidentally stumbled across some good ways of achieving this and some dangerous ways.

It was not natural for me to shift towards self-care. I tried at various points in my life to follow particular methods, models and techniques. I frequently hear people say how meditation just doesn’t work for them; or yoga is a non-starter; or they don’t have time to do anything creative and wouldn’t know where to begin anyway. I’m one of those people. I am highly organised in some ways but completely unable to plan or remember to do any special self-care activities as well.

So I don’t. Well, I tell a lie, I sort of don’t!

Behind a waterfall

I needed to change my attitude towards myself.

Simple…

“Actually Emma, you’re alright really. Don’t take those negative thoughts so literally. Look at your achievements, you’re fab!” But I knew I wasn’t fab. If anyone is going to win a battle of thoughts and words against me, it’s me! Trying to convince myself logically that I was worthy of compassion didn’t work. I learned there was no point arguing with myself. Fortunately, compassion is not actually a feeling. It’s what you do and how you treat people.

But I also knew that I am a practical problem solver. I am not one who is overcome by emotions, and I have never been able to force my emotions anyway. So I stopped fighting myself. It reminded me of when I lived up this really rough track in the middle of nowhere. Friends who attacked the track in their car and tried to conquer it could end up knocking the silencer off their exhaust! I would set out at a slow speed and let the car find the path of least resistance. I’d gently hold the steering wheel but let the car find it’s own way around the potholes and over the bumps. I’d reach the top slowly and surely – and intact.

I didn’t make changing my mindset any part of my journey. Instead, I focused on making a new habit. This was the time where I had to be really organised and plan things with my self-care – it felt clunky and awkward at times. I felt painfully self-conscious and had to keep telling myself to back off when I taunted myself about trying to be compassionate towards myself. I remembered some tips from my music playing. Nigel Kennedy, the violinist says he slows a new piece of music right down so he can play it. And then he repeats it at least 40 times at slow speed. Even when he knows it off by heart and wants to speed up, he keeps creating his muscle memory through accurate repetition. Once it is firmly embedded, he can begin to increase the tempo.

Our brains are not a muscle. But they do have neuroplasticity and can create new pathways. So I practiced. I wrote a list of things to do when I felt bad. I kept it on my phone. They were simple things that would regulate my senses like doing some washing up; stretching an elastic strap; pushing against the wall; listening to music through headphones; eating some crunchy crisps or nuts. They sound ridiculously pointless. How can pushing against the wall stop me from feeling dreadful? But the key was to do them before I felt dreadful – and practice them throughout the day. They are not fixes, they are ways to feel regulated. Once I am regulated, my body slows down it’s search for hidden danger and things begin to gain their true sense of proportion again. Everything becomes more manageable.

I also practice my mindfulness techniques. I have used mindfulness for decades, I occasionally attend classes or formal sessions in order to refresh my knowledge. This isn’t essential, but works for me. Mostly I make sure I do things in a mindful way – once again, it’s a disposition rather than an activity. I may eat part of my meal mindfully – I’ll notice what the food feels like in my mouth, and how it tastes. I’ll put my knife and fork down in-between mouthfuls of food. There’s no way I could eat a whole meal in this way – just by attempting it I’d be putting myself under so much pressure, I’d ‘fail’. So I don’t set myself goals. I just check in with myself several times a day and have a mindful moment. No pressure, no goals, if it doesn’t feel right, that’s fine. Success and failure don’t form part of the experience. If I go a whole day without doing anything mindfully then so what. When I do things mindfully I have moments of peace. Moments of living outside of my busy brain. It really helps. This way of treating myself is compassionate and works well for my personality. I have a tendency to really get into the things I’m into. I’m either no good at something, or I’m an expert! I am either disinterested, or I’m its biggest fan. Self-care can be planned, it can be structured, but it can’t be forced. If it becomes an obsession, it stops being self-care.

How not to do self-care

But I like being into stuff! I quite like obsessing. I certainly love delving as deep as I can into a topic and immersing myself in new knowledge. That’s fine. I see it as one of my autistic strengths. My ability to hyper-focus in times of stress is like a laser beam of positivity piercing the fog surrounding my brain. So I do hyper-focus, but in times of known or anticipated stress like the current pandemic, I have a mantra of ‘wide not deep’ and ‘only positive’. I create myself windows of intense focusing and try not to fixate on only one topic. I have always loved nature and always will. It will always be my escape, my asylum from the urban world. I have absolutely disappeared off down some wonderful rabbit holes in times of stress. I have also focused on other topics too and I have actively distracted myself from immersing myself in struggles that will sadden me or that I cannot change. I may not have contributed to the solution but I haven’t added to the problem either. I sometimes need to be a pacifist and not join some of the wars our world is waging. I need to conserve my energy for my own battles, I need to strategise and conserve my strength for the battles I cannot avoid. I feel lucky that I have an ability to focus and enquire and explore subjects with objectivity and open-mindedness. My self-care involves using my interests as a distraction, to feel good, to achieve and to lose myself. I make sure I use that immense mental energy in a positive way.

I have written a blog about sensory joy and healing. I describe how it feels to experience intensely positive sensory experiences.

https://undercoverautism.org/2020/08/03/sensory-joy-and-healing/

I make sure I prioritise those activities that bring my joy. For me that means walking in the woods; listening to music; having time with no noises from people; time with no questions; mindful moments where I just notice without analysing or questioning. It’s about reducing some of the cognitive and sensory demands.

I may notice myself being unkind towards myself – perhaps I’m berating myself yet again for how crap I am at life. Or perhaps I’m pushing and pushing in the hope things will go right, just because I want them to and I’m putting all this effort in. Sometimes I challenge myself, but mostly I shift my focus. I no longer need my list I practiced with. All that practicing has paid off. I am finding that mostly when things start feeling bad, or going wrong, or however I want to put it, I reach for compassion as readily as I used to reach for a personal insult towards myself. Of course I still feel bad – but I feel less bad about feeling bad. I can feel utterly fed up – but in a safer way than before. The world has not started treating me any better sadly. But I have stopped handing it so many stones to throw at me.

There are other simple techniques I use. These too were part of my practicing and now come more naturally. I read positive things people have said to me in messages. I bake a cake. I avoid interacting with people unless I am fairly certain they will not add to my stress. I do something helpful and kind towards others – it’s quite difficult to treat yourself badly when your mindset is on being kind to others. Even if I think I am the biggest loser on the planet, if I start doing something positive or helpful for other people, my self-loathing shifts.

I find positive physical things to do. Proprioceptive input is massively regulating for me. If I have that horrible sensation in my body that I can’t shift, that is crying out for pain, and that just won’t be soothed, then I mindfully and gently do something that gives me a massive hit of body awareness. Sometimes I think what I want is a hug, but I don’t always want the intensity of another person that close to me. Controlled movements are key. Pushing against the wall; deep massage with an electronic massager; my weighted blanket – all these help me to feel soothed and comforted. I can also create an awareness of my body through moving and enjoying the sensation. Whether that is repeating something that feels good, stroking something that brings me comfort, or even dancing around the kitchen disgracefully when no one is watching. I can locate myself back in this unpredictable, shape-shifting, sensory nightmare of a body again. I can begin to realise it is me and that’s ok.

Sometimes when it all gets too much I switch off to protect myself from further onslaught. It used to be hard to switch back on. I choose to stay engaged more of the time now, but that requires proactive self-care to keep myself regulated.

Here are some suggestions for how you might like to consider making self-care a way of doing things for yourself…

• If you feel yourself becoming tense, angry or stressed, take your time, back off from pushing yourself, take a few minutes to chill

• Accept that sometimes things feel tough and this is not your fault

• Use your senses to notice what you can see, feel, smell, and hear in this moment

• Do something that is fun – dance with your kids, make something, listen to music

• Regulate your senses and emotions so you are more able to cope

• Consider the language you are using towards yourself in your thoughts and words

• Treat yourself in the way you treat your most loved ones

• Make a list of helpful strategies you can go to when you notice you are being unkind to yourself

  • Do something kind for someone else
  • Find one good thing that has happened this year, this week perhaps, or even today. It you feel like it, find another, and another. Let that hyper-focusing mind seek out some positive memories and thoughts.

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Uncategorized

Masking

Photo by Venkat Ragavan on Pexels.com

What do people mean by autistic masking?

I had never heard of this phenomenon until last year. I was having a discussion with a professional who works on the local NHS Autism team, and she asked if I wanted to have a look at a questionnaire about camouflaging and masking. I thought why not, and promptly set about answering the 25 questions. I emailed my response back and was delighted to hear I had scored really highly on all areas! “Well, I’m clearly not as autistic as I thought I was, I knew I’d get a high score because this is all obvious stuff that everyone does all the time. See I’m as normal as the next person”. I thought to myself.

But… 

My high score wasn’t because I’m not that autistic, in fact it indicated that I mask almost all of the time and this is a very common experience in autism.  I was beginning to feel uneasy. I had realised I was autistic by then but wrongly assumed the ‘autism spectrum’ people talk about was a linear thing with mild autism at one end and severe autism at the other. I would probably be a little bit autistic – because I work, I have a family, I function well enough to convince most people I’m normal. And I’ll forget about all that other stuff; the never fitting in, the always knowing I was different, the misdiagnoses and failure to reach my potential – that’s probably all because I’m just such a crap person!  Of course, it is not like this at all – you can no more be mildly autistic that you can be a bit gay, or slightly pregnant. The spectrum is a collection of different elements, aspects and strengths and every one of us who is autistic, has their own unique combination of these. And everyone that isn’t autistic is not on the autism spectrum.

 The questionnaire was scored in the areas of compensation, masking, and pretend social ease. Until this point, I had assumed everybody pretended to be normal all the time. I realised that some people were more ‘normal’ than others, but I had no idea that there was even such a thing as masking. I still cannot comprehend how neurotypical people operate in terms of social interactions, so watch out those of you who know me, I plan to find out and will probably question the hell out of you!

Types of masking.

There are lots of different ways autistic people cover up their autism and its worth having a read of other people’s experiences . I’ll touch on three elements of camouflaging and my choice of terminology has no great thought behind it and is not a definitive explanation – to be honest, much of the language used in research and accounts of masking feels a little judgmental to me – it suggests ‘normality’ and deficits :

Compensation – this includes all the tricks and tips I’ve taught myself (and others) over the years. The techniques for making realistic eye contact by looking at the person’s mouth instead of their eyes. I had the added bonus of having regular investigations and treatment for hearing problems as a child, so my lip reading was positively encouraged. A few years ago, I considered writing a book for autistic people about how to get by in life. I had worked as a manager of a residential service, with a woman who had been in the care system since childhood and had a whole host of psychiatric and behavioural diagnoses. I supported her through assessment for Asperger’s (as it was known back then) and when it came to my work appraisal she wrote some feedback that said “Emma is really good at teaching me the tricks of the trade”. I was delighted at this – not least for the compliment, but for her accurate use of complex language. In fact, I was the one who said to my line manager “What do you think she means by that Karen?”

Masking – this includes hiding my distress, confusion, and difficulties whilst pretending all is well. I have spent my life feeling as if I have been winging it, and I am often only moments away from making myself look totally stupid by asking a question that everyone else intuitively knows the answer to. The further in my career I have gone, the more I have had to mask. Every time I hear a new piece of business jargon I have to look it up so that I can keep up with the conversation. I have to suppress my need for clarity and my desire to blurt out “Why are you talking such utter nonsense?!” But pretending I know what is going on isn’t always helpful. I’ll give you one of my embarrassing moments:

I was sat in the board room in a very serious meeting and the person talking used the phrase “the elephant in the room”. Now, I absolutely knew this was not to be taken literally. An alarm went off in my brain that said “idiom/metaphor/figure of speech alert”. So I used my quick thinking brain to whiz through everything I knew about elephants to try and work out the meaning. Elephants are big – are they talking about something that is big? Elephants have big ears and a trunk – no it can’t be to do with that and stop it Emma, do not go off on a mental tangent about the different types of elephant and their respective physiology. Elephants never forget – aha, maybe it’s to do with memory or remembering something. What else do I know about elephants?….And then the question came: “Do you have any thoughts on that Emma?” And I realised that I hadn’t got a clue what was going on, or what the question was, and I couldn’t even grasp at an answer out of thin air. The conversation had moved on and I was lost in the world of Proboscidea. I was probably the only person in the room with the taxonomic knowledge to name the order that elephants, mammoths and mastodons sit in – and I was probably the only person in the room feeling stupid, anxious and lost! And all because I didn’t want to make myself look stupid for not understanding something. I challenge you to spend a day in your workplace or school considering how complex language is if your default setting is to take things literally.

I also mask my need to move about or do anything that ‘looks’ autistic. I find moving is very regulating, it helps me concentrate, focus and come up with ideas – all the sorts of things employers and teachers encourage. But it would put me in the firing line of ridicule, misunderstanding and people would assume that there was clearly something wrong with this otherwise bright and articulate woman who can’t keep still and behave ‘properly’.

Assimilation – I never felt like one of the girls at school but I knew my life would be easier if I pretended to be like them. I learned about boyfriends by listening to what other girls had to say and joining in the conversations as best I could. I was not attracted to boys at all as a teenager and I wasn’t attracted to girls either. I learned the language of relationships but had no idea of the meaning of some of the terms (‘getting off with’; ‘blow job’ etc). You’ve read how my brain works when I described the elephant in the room – go figure! Many of the girls at school read magazines and studied and giggled at the problem pages and articles on how to know if a boy fancies you and how to flirt and so on, so I joined in and copied. This was useful because it gave me some proper concrete information on how to have relationships with boys and made me appear to have something in common with my peers. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I worked on how to flirt and how to tell if a boy was interested in me but unfortunately put so much energy into ‘getting it right’, I never considered consent or whether I wanted to go out with them. I can’t remember having feelings towards other people as a child, sexual or otherwise. I didn’t like or dislike people. I didn’t look at someone and find them attractive. My sister covered her side of our bedroom with posters of pop stars and my friends talked about boys they fancied and got excited when certain actors were in films. None of this did anything for me at all. I bought a small photo in a frame of George Michael in Speedos, because Wham! were very popular back then and I knew it would be easier if I said I liked someone. The photo sat on my bookshelves whilst I lived at home and was my attempt at fitting in and somehow feels a rather ironic choice now – gay and dead!  RIP George x.

Photo by Egor Kamelev on Pexels.com

Don’t we all mask?

I assumed everyone masks. I know for a fact that my old line-manager swears her head off outside of work but was always totally professional within her role as a director. I know that it would be rude and feel hurtful if I replied honestly when someone asked if I thought they looked good in the item of clothing that I thought looked dreadful on them. I know that you cannot go through life being impulsive and doing and saying whatever you want at the expense of others. So isn’t masking something we all do?

I’d argue that it is not. Those things are the normal day to day, not being an asshole type things we do because we are sharing this planet with each other and need to get on. Kindness is essential, even if it is frequently overlooked and undervalued in our society. Kindness comes first for me. If I choose the kind option then it may mean I modify my behaviour or instinctive response. I may need to hold back and rephrase my honest response into something diplomatic and kind – but I can still be true to myself and be honest. Assertiveness is a good way of being true to yourself because you still meet your own needs but also meet other people’s needs too. I will compromise my behaviour but not my values.

So what is different about autistic masking?

Quite simply. The cost.

Masking your autism always comes at a price. And I have paid with my mental wellbeing. The costs are twofold. The direct mental health costs of camouflaging are exhausting. Whilst I’m concentrating on getting my eye contact right, I’m using valuable capacity that could be used for answering the question or thinking. And the continual anxiety of whether I’m getting it right wears me down emotionally and cognitively. The indirect costs are things like low self-esteem from getting into all sorts of scrapes while pretending to be normal, and not feeling sure of who I am and whether I am an ok person or not, as I feel I’m living a lie.

It erodes my identity because I’m not sure which bits of me are truly me. If you ever share doubts about your identity with mental health professionals, it can indicate various psychiatric conditions and personality disorders. Misdiagnosis of autistic people is common and once a label has been given; every trait, behaviour and experience may be interpreted as part of that labelled disorder  – this further erodes the sense of identity and creates a sense of being damaged or ill. It also creates a sense that you can somehow get better and recover. Autism is not an illness and recovery is not going to happen. Living a fulfilled and valued life can happen though, but in my opinion is unlikely to whilst you perceive yourself as broken and needing to be fixed.

The knock-on effects of mental health treatment can further affect your wellbeing. Stigma, discrimination, and side effects of medication are just three of the many ways this can happen.

Another effect of masking is that you don’t regulate your emotions or senses when you need to. All those times I stop myself from moving about to regulate myself, I stay dysregulated. All that energy that goes into keeping still or not reacting to whatever it is that is causing me to become overwhelmed further increases my distress. And no one knows. That is a serious issue because if no one knows how distressed I am until I absolutely have to show it by either falling apart or completely switching off (some people would describe how they experience meltdowns or shutdowns) then I will look like I overreact. I struggle to identify and verbalise what I am feeling anyway and if I am hiding what my body is telling me I need to do to feel better, no one can ever help me. Also, the idea that so-called ‘high functioning’ autistic people don’t do all those autistic things is reinforced – which is unhelpful and inaccurate. The same is true of not asking for clarification, or time to process information – my needs go unnoticed and therefore unmet.

Regular masking means you may never learn decent coping strategies because no one knows you are not ok. Then when something happens in life that is difficult, traumatic, or distressing, you have no idea how to cope.

Should I take off my mask?

Or even could I? Or do I want to? Yes, I would like to be more “me”, but that doesn’t mean going about my day impulsively and insensitively doing what I please or saying whatever comes into my head. I have a choice in much of what I do. I do not have a choice in how my senses work or how my brain processes information. I will react strongly to a loud noise because my body and brain think I am in danger and no amount of me telling myself otherwise will change that. I will take things literally, or not be able to read between the lines sometimes. I do have a tendency to be honest and upfront, and my brain will opt for the honest answer every time, regardless. I cannot choose how I react to all of these things and sometimes other people need to be more understanding and patient. Where I can choose how to react, then I do my best. Or if I’m having a bad day, I’m a pain in the backside – just like everyone else can be!

I have been very fortunate in having a career where I have had some excellent mentors, role models and line-managers. I trained to become a registered manager by taking part in a scheme where I had placements in a range of different care services under a number of different managers. I used my excellent skills at masking to observe, analyse, copy, and practice the management styles in each placement and gradually hone them into my own style that worked for me. This is where my ability to mask has been a huge benefit. I wasn’t doing it to disguise something, but rather to try out what worked for me so that I could become a good leader myself.

So I don’t necessarily need to stop masking. On occasion it can benefit my mental wellbeing because it enables me to learn skills that are good for my personal development. It enables me to ‘test out’ how to behave in certain scenarios. It helps me learn rules for behaving in particular situations.

However, it is essential that I have balance, and any period of masking needs to be balanced with times of not masking. For me, camouflaging for lots of the time is not sustainable. I am blessed with having people and places that require the minimal amount of covering up.

What am I masking?

I am similar to many autistic people because I compartmentalise things. The world is so chaotic and unfiltered, the only way I can cope is to divide it all up into bits that have their own rules and explanations. That way I can function day to day because I have less to work out. If I am at work, I know how to behave in an appropriate way. If I am in the village shop, there’s another set of rules to follow as far as conversations, behaviour and social interactions are concerned. I can even cope with people being in a number of a categories – living in a rural village, it is quite normal to see people in a number of their roles – my conversation at the GP surgery is very different to my behaviour when I see my GP at a concert we are both playing in. This works well for me until people pop up in the wrong places or the rules change! It enables me to mask better too. I can have a mental phrase book of small talk for the shop, small talk for work, chats while dog walking and so on. I am more comfortable with defined roles and tend to have more meaningful relationships within boundaries. I know how to pretend to be whatever the particular type of ‘normal’ is in any situation. It helps me predict and I feel more confident.

The trouble is, this reinforces that very disjointed sense of who I am. It adds to the questions I have about my identity and what is authentically me. I have needed to join up my compartments a bit more so that I feel more whole. I am not just autistic Emma or wife Emma or mum. This also makes me question again – what is it I’m masking? Where is the autistic bit? Of course, there is no autistic bit in the same way as there is no female bit of me or British bit. These parts of my identity run through every part of my being.

How do I take off my mask?

When I was first diagnosed with autism I went through a process of revisiting every experience in my life and viewing it through the lens of my autism. I looked for anything that was out of place (how very autistic of me!) and I could not find one single example that would show I was not autistic. Things that had puzzled and frustrated me about myself for years became crystal clear. I felt liberated. I felt that I wanted to be proudly autistic and why should I hide? I felt like I wasn’t autistic enough because I was so good at hiding it, and maybe I should try and act a bit more autistic? But I didn’t really want to. I wondered if I was properly autistic because I don’t do lots of stereotypical autistic things. Was that because I was ashamed? How the hell do I be this authentically autistic version of me?

I thought all around this subject and could not get my head around it at first. But like so much of my processing, it took time and involved taking the long way round and detouring off all over the place. I concluded that my need for compartmentalising everything was holding me back. The autistic bit of me is all of me. When I masking, I’m still being me. When I am being a pedantic, annoying know-it-all that won’t stop telling you what it is I need to you to absolutely know, right this minute, that’s me too! The totally scatty, unable to organise her own lunch woman – that’s me. The hyper-focused, innovative thinker that solves problems others can see no way round – that’s also me. The cowering from the sudden noise Emma is the same Emma that stands up confidently in front of people and shares her knowledge. The woman pretending she’s ok because she doesn’t want to let on she hasn’t got a clue, that’s Emma. And so is the woman who stands up for others and tells the truth regardless of the effect, because it is the right thing to do – it’s all me.

When should I take off my mask?

I am not letting myself down or failing to be authentic by masking. How dare others judge me for coping the best I can. Particularly when the risks of not masking are so dire – ridicule, discrimination and misunderstanding. And how dare I force myself to act in a way that doesn’t sit right either – be that through masking or not masking.  

My wellbeing is important. If my masking affects my mental health in a negative way then it is clearly destructive and I need to reduce it. But that’s not just down to me. I may decide “Fuck it, I’m going to flap my arms about next time I need to in a meeting as I’ll feel much more able to concentrate”. That will not go down well – regardless of the rights and wrongs of it.

Do I have the right to? Absolutely. If I had a different disability then it would be accommodated. No one says deaf people can’t move their arms to communicate through signing, because it looks funny and might upset the other people in the room. Do I need to be the warrior out there being authentically autistic so that stigma is challenged? That’s up to me, but no, I don’t have to be.

What would help though is better understanding. Being sensitive to the needs of autistic people and creating more accommodating environments that don’t create sensory overload. Using language that is clear and not open to interpretation. Giving people time to process questions instead of asking again in a different way and thus doubling the amount of processing. If autistic people were properly, compassionately and genuinely listened to, all this would be clear – I am not saying anything out of the ordinary. If people acted in this way then I wouldn’t need to ask so many questions or regulate myself as much. If people got to know me and understood my values and recognised that although  I may seem serious, I have a good sense of humour and although I may seem unemotional, I am passionate about many things. Then, when I do say the wrong thing or act in the wrong way, they’ll know it’s just Emma being Emma and she doesn’t mean anything harmful by it.

How will this look?

Living authentically, is about living. It’s the journey not the destination. The world is not ideal so it is likely I will always have occasions where camouflaging my needs is preferable to meeting my needs publicly. If I choose to mask, that’s fine and totally authentic. If I can’t help myself from masking or don’t even know that I’m doing it because I’m so used to it, then that is clearly authentic too. Masking is never a sign of failure. Aspiring to not mask is not essential – the world gives autistic people a hard enough time without us giving ourselves one too. I have more acceptance of myself because I have more understanding – and that means I feel more in control and more able to choose how I live. Will I apologise for needing to meet my own needs and regulate myself? No. Will I ask more questions when I need to? Almost definitely. Will I do things that make me feel self-conscious? Probably not. Will I compromise my values or lie? Never.

But how will this work for everyone else – if I have considered my part then what about you? If you are someone who has good social skills and understanding then do you really have to insist that someone who is uncomfortable with eye contact looks at you? If you are good at all that stuff then why is it not you that is changing your behaviour? If you understand something and someone asks a ‘stupid question’ then why not be patient and explain rather than show your frustration. If you are puzzled by another person’s sensory experiences then why not enquire in a gentle way so that you can adapt and adjust so that they feel as comfortable as you do?

I don’t purposely do things to make other people feel uncomfortable, but I can’t tolerate bullshit either. The world feels very different at the moment and I’m pleased to see people acting in a less bullshitty way. It is good to see that we all wear casual clothes at home when we are on our work conference calls. It is good to see that many of us have pets and children that are important to us and what we really like is having a walk or sitting in the garden. When the ability to shop, spend and consume indiscriminately disappeared, many people re-evaluated what was important to them. Why not make understanding and accepting each other more, part of that?