I’m angry. I don’t want to be angry. I hate being angry. But I’m REALLY fucking angry. At least, I think I’m angry…..I get confused sometime and mix feelings up….maybe I’m actually REALLY sad with a side of severe frustration. Either way, I feel let down. And the realisation of how badly I’ve been let down, how much I’ve struggled for 36 years, has hit me like a tonne of bricks and I can feel myself unravelling. I know that’s actually good. I need to unravel so I can straighten myself out and wrap myself back up how I SHOULD be. But still, it’s hard to deal with. So, SO hard.
When I say I feel let down, I don’t mean by any person in particular, or even anyone close to me. I mean by the system. The system that, for so long has failed, and is still failing, neurodivergent people who don’t fit the stereotype that society expects of them. If you’re a little boy who is non-verbal, likes to play by yourself and line your toy trains up and rocks back and forth, you’re good – have an autism diagnosis. If you’re a hyperactive little boy who can’t stay still or concentrate in class and is disruptive as a result, you’re in luck – have an ADHD diagnosis (and probably medication). But if you’re a girl (or boy) who fights severe anxiety to get every word out of her mouth, who uncomfortably plays with others because she’s been told she’s supposed to, and chews her hair/bites her nails instead of rocking….well then, sorry but you’re just shy and you’ll grow out of it. If you’re a girl (or, again, boy) who sits nicely in class and doesn’t disrupt anyone, looks like you’re listening but is actually in a world of your own because a bird just landed on the roof outside the window and now you’re imagining what that bird has been up to today and where it’s going and if it has a family and now you’re wondering what it would be like to be a bird and what it would feel like to fly and oh that cloud looks like a rabbit! Yeah, you’re just easily distracted and you need to try harder to concentrate.
I don’t remember a day of my childhood or adult life where I had to go to playschool/school/work and didn’t feel like crying numerous times a day. The anxiety every day that I think most people only have if they have an exam or job interview; anxiety that no child so young should feel. I remember my face being red hot and my heart thumping and me holding back the tears every time I was dropped off at playschool, and then infant school, junior school etc, desperately wanting to go straight back home, and even chasing my Dad across the playground begging him to take me back home. Why? I guess most people would put it down to separation anxiety, not wanting to be apart from my parents. Something I would grow out of. But it wasn’t that. I couldn’t have explained it back then but now I realise that every day I was struggling to mask and I was in sensory overload – the noise, the lights, the smells. I couldn’t cope. But I pretended I could. I knew what “naughty” behaviour looked like so I kept quiet and put up with it and paid the price later. Later when I got home and had a massive tantrum (which, of course, I now know was a meltdown) and later as in now….as an adult having to deal with the fact that such a small version of me had to go through that shitty, low level trauma every day. Except it wasn’t really low level. Not for me. It was hell.
I survived school by living under the radar and doing my best not to draw attention to myself. Every single social interaction was a struggle, paying attention in class was near on impossible. But I pretended I was OK and no one noticed I wasn’t until I started starving myself when I was 14. Even then the only real focus was my weight loss….there was no real concern as to WHY I was doing it. And it was easier for me to stick with the assumed narrative of “I wanted to be skinny because skinny equals attractive” than to admit I felt totally out of control of my own existence and restricting my food was the only control I had. Or that I wasn’t trying to be skinny to be attrative. I literally wanted to disappear so no one would look at me anymore.
But I’ve always known I struggled with school, that’s not actually the part I’m finding hard to deal with at the moment. My real issue is work and general adulting. The expectations that are on me to perform and act a certain way, based on the assumptions that I’m neurotypical and therefore I “should” be able to do something because everyone else can. Here are just a few examples of things I’ve been told throughout my life by various people:
“It’s not that difficult”
“Just get on with it”
“If she can do it so can you”
“Why do you make everything so complicated?”
“You just need to try harder”
“You’re so difficult”
“What’s wrong with you?”
I worked in the same office job for nearly 12 years. This does not fit with the stereotypical image of autism or adhd, when looked at from the outside. I appeared to be coping. But I wasn’t coping. I really, REALLY wasn’t coping. I couldn’t have admitted it then. I couldn’t quit my job, both for financial reasons and not wanting to appear a failure. My job SHOULD have been fairly easy. But I was always the one struggling to get on with things, struggling to keep going, taking longer to do simple tasks than everyone else. In our busy period where we split the workload fairly, I was the one always behind and having to have other people step in and help me. I was drowning but no one really noticed until I was also going through divorce and redundancy and suddenly it was more expected and acceptable for me to be falling behind. Just like in school, I was constantly trying twice as hard just to perform half as well as everyone else.
When I think back to my office job the strongest memories I have are the sensory ones, and it stresses me out just thinking about it. The bright, flickering lights, the hustle and bustle of people moving around me. I could hear every conversation/telephone call that was going on in my part of the office (which added to my already horrific phone phobia because I didn’t realise that other people didn’t hear the same amount as me and I hate being overheard on the phone). The talking from nearby meeting rooms, reception, the kitchen, even the toilets. Not to mention the buzz of all the electrics, the tap tap tapping of the keyboards, phones ringing, printers and photcopiers going, and the toilets flushing, hand dryers, the shower in the shower room, tea being made and the microwave in the kitchen and noises from outside. I could see the low level flickering of the horrible tube lights, and remember having to have one moved because I couldn’t concentrate on my computer screen with it where it was. The trees moving in the wind outside (even when I wasn’t next to a window), or the shadows of the trees coming through the window. People moving outside. Talking outside. Traffic. Trains. I was constantly processing all of this, and I still had to concentrate on my work too. But I didn’t realise that most people can filter those external noises out. So I assumed my failures to be able to concentrate were something else. Laziness mostly, or lack of motivation. I felt like I should be able to do it, so if I wasn’t doing it it was because I couldn’t be bothered. I didn’t consider the possibility that I just COULDN’T.
Being made redundant from that job was a blessing in disguise. Not a financial blessing sadly, but one that helped me process how truly unhappy and stressed I was there. BUT it’s also brought out the struggles that I now realise as Autism/ADHD based. The sensory overload. The communication struggles. The fear. The masking. The executive dysfunction. And it makes me feel like an utter fucking failure. The meltdowns that resulted from all of this. Because I’m STILL gaslighting myself into believing I SHOULD be able to deal with it. I’m still treating myself like a broken neurotypical and not a perfectly functioning neurodivergent. I’m convinced that, even if I do get the formal diagnosis, I’ll have people say “you’re not autistic because [insert reason here]”. And I say “if” I get a diagnosis not because I doubt if I am neurodivergent – there is no doubt in my mind that I’m neurodivergent – but because I know how hard it is to get the right professional who actually sees past the stereotypes. I’ve spoken to so many autistic people who have even had professionals tell them they can’t be autistic because they’re married with kids. It’s a joke. They understand that autism is genetic, right?! Of course autistic people have and raise kids! And do a bloody good job of it. Your parenting ability isn’t based on your neurotype. Your parenting ability is based on being a loving, nurturing person and not a total arsehole.
Anyway….I digress. Work….housework….adulting. Fuck it’s hard. For everyone. I’m not here to invalidate anyone else’s experiences because we all have our struggles. I’m just here to talk about mine. I’ve written about walls before and they’re what make my adulting so difficult. I can be sat in a shit-heap of a house, but it’s like I have an invisible weight stopping me from just getting on and dealing with it. I have anxiety about HOW to deal with it. I do it so many times in my head that I’m exhausted before I’ve begun. I don’t understand how the mess piles up so quickly or why I find it so hard to deal with. But I do. I always have. And when I finally do get it done because I have to, it takes me so much longer than it does most people. And that’s the sort of thing I’m referring to when I say I feel let down. No one noticed me struggling to keep my head above water, and that’s mainly because I’d been programmed to not admit I was struggling, to try and just keep going because whatever was broken in me will one day be fixed and then I’ll make everyone else’s lives so much easier because I won’t be so difficult anymore. Except there is nothing to “fix”. I’m not broken. I’m different. And I need different ways to get things done. But before I can find those ways and start using them, I need to unravel the “broken neurotypical” coping mechanisms and start again.
My other struggle at the moment is how do I explain this to the kids? They know I’m not good at keeping the house in spotless condition and they don’t mind that – they’re pretty happy that they have a mum who will play Roblox with them and be all playful and shit. But lately I haven’t been feeling as playful because I’ve been unravelling and I feel it’s only fair to explain to them why, on their level. And I know they’ll understand, because we’ve spoken before about different brains being like different games consoles and you can’t judge a Playstation on it’s inability to be an XBox. I think I have imposter syndrome setting in about telling them about my neurodivergence before I have a formal diagnosis. But I know I need to tell them why Mummy isn’t as able to do the housework as well as some other mummies. I need to remind myself that self-diagnosis IS valid, and it’s better they hear it from me than from someone else.
So, yeah, I’m angry. Or sad and frustrated. Or whatever. I’ve been let down. So many undiagnosed adults have. Not by my parents, my family or my friends. They didn’t know any better either. I’ve been let down by a society that tells us we can have it all – go to university, have a career AND a family and smile while we do it all because aren’t we SO lucky? And yes, we are lucky….if this avalanche of being everything to everyone was a choice we could afford to make. I’ve never been quiet about how much I wanted to stay at home and raise my kids, or the fact that I’m not career-oriented and wanted to be a mum first and foremost. Little did I realise how much that desire actually fitted in with my neurotype. I’ve burnt myself out trying so hard to be neurotypical and doing half-arsed jobs of everything because I’ve not been able to stretch myself to do it all. I’ve also been let down by therapists and relationship counsellors who have listened to me describing my meltdowns, but instead of properly discussing potential causes, they likened them to toddler tantrums and suggested I try mindfulness. Ummm, yeah tried that, it was kind of a special interest for a while. Got bored. Failed. Pictured the anxiety passing by like clouds and got distracted by the imaginary birds in the sky. No fucking joke. Although, in all seriousness, I’m actually very mindful anyway so “practicing” it doesn’t make sense to me.
I’ve spent the last year realising and processing my neurodivergence and have only just reached the pissed off phase. I think that’s OK. It will pass and I’ll be able to focus on becoming the best version of me, the openly neurodivergent me. I think I’m already doing pretty well at that, and this is hopefully a blip in my unmasking. I just need to learn some ADHD life skills to re-think how I do things. And stop trying to be what everyone else expects of me and learn to just be ME. And play Roblox with my kids instead of stressing out over what I haven’t done. Because they much prefer a Roblox playing Mummy to a stressed one. The housework will get done, I just need to feed my pet unicorn on Adopt Me first…..