Masking and what it means to me

If you read just a small amount about how autism presents in females, chances are you’ll stumble upon the word “masking”. But what is masking? For me it’s made up of a number of different things.

For me, masking is hiding the parts of me that may be considered socially unacceptable and forcing myself to act in a more “neurotypical” way. It’s psyching myself up to leave the house and face people, even if it’s just to pop to the shop or do the school run. It’s laughing at a joke even though I don’t think it’s funny. It’s wearing certain clothes because if I wore what I felt most comfortable in people would think I’m weird. It’s forcing eye contact when talking even though it makes me feel uncomfortable. It’s plastering a smile on my face that’s so convincing even I start to believe it’s real. It’s trying to not fidget even though I desperately need to. It’s all of this, every single day. It’s basically like living every day in a job interview, trying to convince people that you’re like them and that you’re worthy of a place in their world.

I remember the first time I actually noticed I was masking, although back then I hadn’t cottoned on to the fact that I’m probably autistic or the term “masking” yet. I went to a friend’s house for a rare child-free evening, and a small group of us were there. This was my my best friend at the time, her boyfriend, and a couple of other friends who my (then) husband and I were both friends with. I’ve since lost touch with all of them, I guess he got them in the divorce. Anyway, it was that evening that I realised that I had a different “persona” with them. I laughed at the jokes, I smiled a lot, I appeared to be fitting in. But I didn’t fit in. And I realised that I never really had. I had my “game face” on. Now I’m no actress, I can’t lie to save my life and I don’t do fake. I realised that I simply exaggerated the parts of me that fitted with the company I was in, and pushed down the parts that didn’t. But it did, to some extent, feel like a performance. And I felt a sense of adrenaline after being with them, much like you would have after a “real” acting performance. And then I quite quickly had a massive low.

And then there’s work. Before having kids I worked 5 days a week, after having my eldest I worked 3 days a week. I worked in an office doing database work. This was not my idea of an enjoyable job. But it was flexible, it paid well. It worked for my family. Apart from it actually didn’t. Not really. Because every day I was there I had to have my work mask on, and it was a heavy mask. The constant office chit-chat, the mundane work, the meetings, the sensory overload from noise and lights but having to pretend I was ok. My lunch breaks were a real struggle too. The transition from being inside the office environment to being outside, and then back in a while later. When I could I didn’t bother going out because taking the work mask off for such a short time only to put it back on soon after was so difficult.

I even felt I needed to keep my mask up at home with my husband. He never did well with disabilities, be it physical or mental, and was very open about this fact. I was always so aware of the need to do or say the “right” thing. I struggled to keep up with things around the house, and was made to feel bad about that because my friends could do it so I should be able to as well. I simply couldn’t be myself around him. But he should have been my safe place, where I could be myself without fear of judgement. So that messed with my head quite a bit, and so home would be where I would have what I now know to be meltdowns. I would scream. I would cry. I’d hit myself with whatever I could (the pyrex jug to the head was a particularly memorable one, resulting in a disgusted look on his face and the words “what’s WRONG with you?” and a lovely bruise for days). Or I would throw something. It wasn’t pretty. But it’s what happens when you spend your entire life hiding fundamental parts of yourself away and forcing yourself into a box you don’t fit in.

Interestingly, once my husband and I had separated, and a year later I was out of my job through redundancy, the weight of these two masks were no longer a regular part of my life, and so I settled down better in myself. I was happier. I was more me. I was able to accept myself better and I had far less meltdowns. The pressure of seeing my old friendship group is no longer there and so that mask is gone too.

I’m pickier about who I spend time with now. If someone comes into my house they don’t get to judge the mess. I do my best, but anyone who suggests that my best isn’t good enough can re-aquaint themselves with my front door as they leave. My true friends are the ones that accept me for who I am. They build my box to fit me, rather than try to force me into the box they’ve already made. They accept that if they come over I’ll likely be wrapped in a blanket with a fidget toy in hand, probably rocking my legs too and fro as we either talk or sit there in silence because we can do that. They know that I struggle to go out places and if I need to go to shops they offer to come with me so I’m not alone. They don’t push me to do anything I don’t feel like I can do. It’s amazing.

Same goes for my boyfriend. 18 months in and he’s still waiting to see She-Hulk in full meltdown action. That’s partly because I don’t have such heavy masks elsewhere anymore but it’s also because I don’t have to wear any sort of mask around him. He’s seen shutdown mode a fair few times, which has made me realise something else. In the past I had to push my anxieties, sadness, etc down because it made other people feel uncomfortable. Avoiding these emotions didn’t help at all, all it did was suppress the shutdown and skip straight to meltdown instead. I strongly believe that by being able to shutdown more often now, the meltdowns are kept at bay because I’m getting the recovery from masking that I need.

I still mask a lot. I can barely leave the house without one. I think the masks are less heavy when I’m with my boyfriend or one of my close friends because I feel like they know I’m wearing that mask, that I am having to put extra effort in and that it does weigh me down. But just them knowing that and still being there for me, takes a bit of that weight off.

I dont know if I’ll ever be able to unmask completely. I need to find a job. I have school runs and errands and lots of things for which my masks are almost perfected and I don’t know if I want or even need to remove them all. I’ve been a social chameleon for 35 years, and that’s going to be difficult to stop. Some of my masks aren’t damaging. They only require minor tweaking (just a little less quirk and a little more normal, but not so much so that I’m not me anymore) and so are easier to come down from. For me, the important thing is that I’m recognising the masks, I’m still learning who the fully unmasked version of me is, and that those closest to me see my unmasked self and accept me as I am. And I’m ok with that.

8 reasons I know I’m autistic

“I’m autistic” are words I’m still getting used to. Without an official diagnosis I feel a fraud using them. But I know, not just in my heart but down to my bones, that they’re true. I’m autistic. How do I know? Well, here are some telltale signs for a start. This is by no means an exhaustive list, and I know that there are plenty of neurotypical people out there who also experience a number of these for various different reasons…these “symptoms”, those I mention as well as those I forget to, certainly don’t automatically mean autism. But for me the number of symptoms, along with how significantly they affect me, point so strongly in the direction of autism that I can’t ignore it. 

1. I’ve never felt like I belong.

Otherwise known as “wrong planet syndrome”, I’ve always had this sense that I’m not like most people and don’t belong here. Not in an “I’m better than you way”, quite the opposite in fact. I’ve always felt, well….defective. Like I look a bit like everyone else, and I act a bit like everyone else, but inside I’ve always known I’m different. I’ve simply never fitted in, and up until the last few years I nearly broke myself trying to pretend otherwise.

2. My brain works differently

Well here’s a no-brainer (see what I did there?), since the whole point is that my brain is wired differently from the majority of people. Yes, I know everyone’s brain is wired differently. No two autistic brains are the same, and no two neurotypical brains are the same. And some neurotypical brains will have similarities to autistic brains and vice versa because that’s how diverse EVERY brain is. An autistic brain is no better or worse, it’s simply different. And the traits and wiring create SUCH a difference that it affects how we process the world around us.

So what’s different about my brain? Well I learnt a good 15 years ago that apparently it isn’t normal to be able to picture a calendar in your brain so clearly that you can quickly work out what day of the week a certain date in the future will fall on. And apparently this “skill” is quite fascinating and results in your friends testing you in the pub on a Friday night. Fun times.

My calendar brain was lost for a while post-pregnancy (I guess baby brain really is a thing) but it’s slowly come back over the years. I have a similar memory for car number plates. Where I live the car parks use number plate recognition and you have to enter your number plate into the pay machine, and it was only then that I realised a lot of people I know have to keep their number plate written down until they learn it.

3. I stim.

I have to be honest, I had absolutely NO IDEA what stimming was until I read about it in relation to my son and realised he does it. And then as the “I’m autistic too” penny dropped (why do pennies drop? I never understood that) I realised that I stim too.

For example, I literally cannot keep my feet still. Ever. It drove my ex nuts, although of course back then I was simply considered a fidget (one of many labels) who should be able control it. But hard as I tried to keep my feet still, I just couldn’t. You know that feeling where something REALLY amazing is going to happen and you feel like you might burst with excitement? Yeah my feet seem to be permanently like that…they just HAVE TO MOVE! I imagine it’s like hand flapping but in the feet.

But it’s not just the feet. Lying in bed it’s my entire body sometimes (although my feet start it). But my hands have always subconsciously reached for something to fiddle with…the cords of a hoody, keys, clicky pen (the multicolour biros are the BEST for this), or just tap-tap-tapping my fingernails on a hard surface. Since realising that I seek fidgety things, I’ve tried out various fidget toys and am not totally addicted to Tangles. They’re just the best.

Oh, and I do actually flap my hands. The “classic” autism stim that I never pictured myself doing…I do it and I’d never realised until a little while ago. I was getting overstimulated and stressed in my kitchen and I suddenly noticed I was flapping my hands like a penguin trying to fly (for want of a better description). When I noticed this, what surprised me was how NATURAL the movement felt, and that was the moment I realised it felt natural because I do it a lot. You know in television shows or movies when a person has a lots of little flashbacks that kind of roll together telling a story of their past? It was almost like that for me with my hand flapping, suddenly picturing times I’d got stressed and realising that the flappy hands were, indeed, a life long “thing”. I’d just never realised. How is that even possible?

There are other stims…they may need an entire post dedicated to them!

4. I hyperfocus.

Or, as other people have told me in the past, I obsess. But I don’t like the word “obsess”, probably because of the negativity that comes with it. The judgement in the voice of the person accusing me of being obsessed with something. Now I realise what it is, and that it’s normal for brains like mine, I feel a lot better about it.

My latest hyperfocus has, if course, been autism. I have 40+ tabs on my phone open relating to autism, am following everything j can, reading everything I can, watching YouTube videos and generally “obsessing” over it. My boyfriend said a while ago how it had clearly been at the front of my mind for ages and, while he appreciates the need to research and he would research too, my research hit a whole new level. I was like “yep, that’s what I do”.

Previous “special interests” include photography, natural beauty, natural/homemade cleaning products, various health related things for either myself or my boys, books, jewellery making. As a teenager there were the typical boyband/Leonardo DiCaprio obsessions, whales and dolphins and dieting, which leads me on to…..

5. I was anorexic as a teenager

This has to be my all-time ultimate hyperfocus. It’s one that I wouldn’t have initially connected to autism but, apparently, there is a higher prevalence of anorexia in autistic girls/women than in neurotypical girls/women. And I can understand this.

My anorexia was never about how I looked. For the most part it was about having something in my life I could control, and what better than something I could measure quantitatively on such a scale….counting the calories going in, counting the minutes of exercise, counting the number of sit ups, watching the numbers go down on my weight/waist measurement. Mix in a nice dose of feeling like I literally wanted to shrink away so that no one would notice me….I never realised that starving myself would have the opposite effect of people noticing me and being concerned.

I’ve never relapsed back to anorexia. I’ve never dieted as I know I have the potential to take it too far. I don’t know if relapse is common or uncommon in autistic women….I think the reason for me never relapsing is that it was never truly about my size or body image. I remember the day my parents took me to the doctor for the anorexia and the doctor told me to go and eat a doughnut and I was like “ok” so I did because I realised I was allowed to. I always had a heightened sense of awareness that something was wrong but I couldn’t pull myself out of it until the doctor gave me permission. Recovering from anorexia was like a further quantitative control, only this time I was watching everything go the other way. And when people would tell me “you look healthy” I took it as “I look healthy”, whereas I’ve read that a lot of people take “you look healthy” to mean “you’ve gained weight”. A nice healthy dose of literal thinking helped me to actually take a compliment instead of turning it into a negative.

6. My sensory processing issues are through the proof

Do you know what’s more frustrating than having a child have a meltdown when you need to leave for school because his shoes are too loose or his socks too “uncosy” or a lump in his sock or his coat not feel right or a label is itchy? Or having to tuck his bed sheets in “just right” and answer him 15 times in one evening because he can’t get to sleep because he’s too hot or too cold or heard a coin drop three doors down and wants to know what the noise was? Knowing that he inherited ALL of those traits from YOU. Sensory processing issues are a real “fuck you” from Lady Karma.

Sensory Processing Disorder wasn’t something I’d heard of, again, until I came across it while reading up on stuff for my eldest. This time I knew INSTANTLY that I have SPD, years before the autism lightbulb started to flicker on. I’m so fussy with clothes (I’ve been known to freak out and go home to get changed in the middle of Christmas Day before because my clothes felt so uncomfortable), socks are a nightmare (either lumps or falling down the leg etc), I can’t wear lace up shoes because I’m SO aware of the slightest difference in tightness and can never get it right. My bed had to be tucked in super tight around me as a child which drove my parents nuts (I’m still incredibly fussy about my bedding and hate loose sheets around my feet). I’m super sensitive to bright lights, loud noises and smells. I’ve always been a fussy eater, and while I’ve improved as I’ve older, my biggest issues has been, and always will be, texture of food. Weirdly, while I don’t do well with strong smells and bright lights, I love strong flavoured foods and hate bland stuff…proof I guess that you can be both sensory sensitive and sensory seeking all at the same time.

7. I have the executive functioning of a carrot

Seriously, most of the time I’m fucking useless. My brain is constantly in overdrive, processing everything around me, as well as trying (and often failing) to predict things in the future and going over things from the past. It’s exhausting and leaves me with very little energy to actually DO STUFF. Even just writing this, something that I really want to do, is a struggle most days.

I do get stuff done…just slowly and not as much or as well as I’d like. But my kids and I have clean clothes, we have food to eat, I get the essentials done every single day for my boys and that’s the important thing. The house is a mess but it’s not dirty, and I’m learning to ask for help where I can.

This does currently leave me in a tricky position job wise, and therefore financially things are very tight. I worked in the same job for nearly 12 years, despite hating it and it causing me severe stress and anxiety (and what I know now to be meltdowns) because the mask I had to wear was so heavy. Since being made redundant I just can’t find the right job and I know my executive functioning issues don’t help me. There is something out there for me I know, I just need to find something that feeds my interest and allows my hyperfocus to kick in. I don’t think it will be as easy as it sounds but I’m going to keep trying.

8. I’ve passed every single autie test I’ve done with high numbers.

I know some people don’t believe these tests are any good, but I’ve also read and watched enough blogs from (diagnosed) autistic people who give them a lot of credit and recommend them as a great place to start when seeking a diagnosis. All of my results strongly indicate a neurodivergent/autistic brain, and will be printed off to take to the GP once I finally find the courage to do so.

I’m going to stop my count here….not because that’s the end of my reasons, but because I could write a book on the subject so need to stop for now.

The most important thing for me, taking all of my reasons into account, is that it finally feels like I’ve found the answer to why my brain is like it is. Nothing has ever fitted my internal experience like autism does. I know it. I feel it. I am autistic.

Comfort zone

Am I the only one who doesn’t really understand when people talk about needing to step out of your comfort zone? I’ve always been told this, especially in terms of employment.

But here’s the thing….I pretty much LIVE outside my comfort zone. My comfort zone is literally that: comfort. My warm house, a cosy blanket/duvet, soft clothes, a book, preferably my boyfriend too.

I step out of my comfort zone every single day. Numerous times a day. Walking down the road to the shop is out of my comfort zone. School drop off/pick up is out of my comfort zone. Venturing out further than that is even more out of my comfort zone.

My old job, despite being familiar to me, was well outside my comfort zone. So when people talked about career progression and how I have to step out of my comfort zone if I want to progress in my career (who said I wanted to progress anyway?) they have no idea what they were suggesting in terms of how my brain reacted. It was like someone who has a severe fear of heights even from, say, 2 floors up being told to do a skydive.

But if I tell people how small (and cosy) my comfort zone is, they turn round and say something along the lines of everyone wanting to cosy up at home but that doesn’t make it a comfort zone. But for me it is. It really truly is. I have to psych myself up every time I leave the house, and try to push the feelings of panic back down just so I can get through even a short trip appearing “normal”.

If I go to the shop to buy something specific, and they don’t have that thing in stock, that plug on my panic stops working and I have no idea how to handle the situation. Do I leave empty handed? Do I buy something else instead? I can literally place the aisles over and over not having a clue what to do. What if I buy something else but it’s more expensive and rubbish? I could go to another shop but that’s even scarier. Popping to the shop is NEVER easy.

School pick-up brings up issues if the few people I’m comfortable standing with aren’t there. Who do I stand with now? Do I look rude not standing with those people? And if my friends are there but they leave before me and I’m left standing alone while my kids play, the world literally starts to spin around me and I start to disassociate. Not enough to cause anyone else to notice though.

So yeah, my comfy place truly is my only comfort zone. Just going out into the world pushes me out of my comfort zone and causes me fairly major stress some days. And I’ve always felt there was something wrong with me for this. Now I just realise it’s who I am and my comfort zone is my little world in a bigger scarier world. And that’s ok. And I can continue to leave that comfort zone on a daily basis as long as I know I have it there to return to. Please just don’t ask me to go too far away from it or leave it for too long.

You mean I’ve been autistic this whole time?

So I’m starting this blog to help me process a fact that I need to come to terms with….you can probably work out what that fact is by the title of this post but I’ll give it to you anyway….I’m fairly sure (99.9% certain) I’m autistic. And that fact alone is a massive, well, headfuck really. (Oh and I swear a lot. I might as well make that known now in case it comes through more often than I mean it to in my writing.)

I should say straight away that, at this moment in time, I haven’t started the process of seeking a diagnosis so I am, for want of a better description, self-diagnosed. Self-diagnosed autism that is, not self-diagnosed sweary person, I think the world had already diagnosed that part.

So, a bit more about myself….well to be honest that’s quite difficult for me because I want to keep this blog anonymous for now as I haven’t made my suspected autism (which, from now on I will refer to simply as “autism” and drop the “suspected”) public knowledge and I have more work to do to process it all before I do that…and I want the diagnosis. So this blog is partly here to help me process it all in my own way, and maybe meet a few other late-diagnosed/self-diagnosed auties along the way. Am I allowed to use the word “autie”? I hope so given I’ve used it in the name for this blog. I like the word. So I’m sticking with it.

Anyway….me. Well I guess I’ll stay as anonymous as I can while giving enough information to give context to my posts and ramblings. So here goes…. I’ve been living on this planet that is supposedly my home, but has never quite felt like my home, for 35 years. I have two little boys, B is 9 and I’m fairly sure he’s from the same planet I’m from (wherever that is) and Z is 6 and….well he’s on a different planet entirely, but in a totally nutty loon kind of a way. Really, I think he’s actually the only one of the three of us whose brain actually originates from this planet. He’s insane in the funniest way, but neurologically speaking, he’s actually the reason I came to realise his big brother has such big neurological differences, which led me to realise I do too.

I’ll write a separate post on all the (many, many!) reasons why I believe myself to be autistic, but for now will briefly explain what first brought me to this conclusion last summer….

Since he was tiny, B has always been a bit different. But not “enough” to really draw any attention to himself from professionals. This has always caused struggles as a parent, because everything I’ve ever been advised to do to help him (or discipline him) simply hasn’t worked. How do you put a child in the naughty corner when he point blank refuses to stay there and will kick you in the (pregnant at the time) stomach repeatedly while you try to hold him in it? Needless to say I didn’t continue down that path, even though I was told I needed to be persistent by his Dad. Just….no. My gut feeling has always been so against most “normal” parenting tactics, and I quickly found myself resonating with positive, or gentle, parenting. And I know B appreciates and responds better to this. Sadly it’s led those who think I should have a more authoritarian approach to my parenting to blame me for his behaviour.

So what is B’s behaviour? Well he’s honestly one of the kindest, sweetest boys I’ve ever met. But he also has one hell of a short temper on him and gets incredibly aggressive when angry. He’s such an anxious kid and is scared of being anywhere in the house alone. He’s always watching his surroundings, taking it all in more than most people, as though he’s learning the environment and how to act accordingly. He struggles to sleep, he always has to be in control and he spins more than my washing machine spin cycle yet somehow doesn’t feel sick or dizzy. He’s got a real “movement” need but not in an energetic sporty way (although he is naturally athletic) but in a sensory seeking way. He was the toddler who would spend an hour in the swings in the park…and I was the mum pushing him for that hour. And did I say sensory? Oh wow his sensory needs….his bed, clothes, socks, shoes, paint threshold, there is definitely sensory processing disorder in there. But he’s never quite fitted the classic ASD symptoms, and masks at school and everywhere else but with me so no one else sees it. I’ve talked to friends who have questioned ASD which is what got me doing more research, and the lightbulb moment was when I stumbled upon Pathological Demand Avoidance (PDA) and realised how much of that is B. I read everything I could, reduced demands as much as I could, and things definitely aren’t perfect but there has been improvement in how he copes. More on that in another post. I’m still fighting to get him assessed, because sadly where I live it’s being put down as “behavioural problems” and ignoring the underlying causes of said behavioural problems.

I’ve always resonated with B; I’ve always had a short fuse, prone to meltdowns, high anxiety and sensory issues to name a few. But the first time I actually connected the dots realised I may also be autistic was last summer when I was reading an amazing book called Can You See Me? by Libby Scott. It’s written by, and about, a girl with autism and PDA, and is so brilliantly written. I cried so many times reading this book as I realised so much of it described my own childhood (and continued) struggles, and slowly the realisation that I might have autism started to sink in. Soon after reading this book I attended a PDA training course, to try and get some further ideas on how to help B. This pretty much cemented the realisation that I have autism, that this is why I share pretty much all of B’s traits and it was missed all those years ago. So I did what I do best, and went off and researched female autism until I couldn’t find anything I hadn’t read. I currently have about 40 tabs open on chrome, as many books as I can find on the subject on my kindle and more physical books in my house. And everything I read, and I mean EVERYTHING is like a big fat smack in the face that says “how did you make it this far in life without realising you’re autistic?!”.

But here’s the thing….I think deep down I’ve always known. Or at least, I’ve always known I’m wired differently. I remember reading A Curious Incident of the Dog in the Night Time about 15 years ago and thinking it then…but I also remember thinking “but I’m female and although I feel that way, I can’t be autistic because I don’t look or act autistic. Turns out I do act pretty autistic sometimes. But it also turns out that I don’t look autistic because no one does. And I don’t outwardly act autistic in front of many people because I mask. And that mask is slowly coming off.

So that’s the start of my autism story….sorry it’s a bit rambly. I’ve found so many amazing pages and groups so far by or for women on the spectrum, and I’m sure I’ll be referring to them in due course. I feel like I’ve finally found a community I belong in. I worry that sounds rude to the friends and family and wonderful (WONDERFUL) boyfriend I have who aren’t necessarily part of the neurodiverse community, but it’s not meant that way at all. My boyfriend and my closest friends who know what I’m going through and are supporting me are my people through and through. They’re my community, my home. But it’s nice to also find the bigger community of people who have similar experiences.

I think I’ll leave it there for now…if you’re still with me then thank you for sticking with me and reading to the end. I’ll be aiming to make more sense in the future!