Does the world need to change? And who for?

So I was talking to my boyfriend a while ago about an ADHD article I shared with him and it got him mentioning some other articles he’s read from the autistic/neurodiverse community that were saying things like “the world needs to change for us”. I didn’t realise until a while ago, but it appears that there are neurodivergent people out there creating a “them and us” mentality, which sadly makes sense to me but also really upsets me.

And it’s got me thinking about the world and whether it really does need to change, and I actually think it does. Does it need to change for us? Well, yes, but not the “us” in the neurodivergent sense of the word. I genuinely think the world needs to change for all of us.

Since getting my ADHD diagnosis (oh, yeah that happened!) I’ve been talking to my boys more about neurodivergence and how everyone’s brains (neurotypical and neurodivergent) are different. The jury is out on whether my boys are neurodivergent, I have my suspicions and my diagnosis increases the chances, but I’ve always tried to cater for their individual differences anyway and this will never change. But I’ve realised I’ve never thought of it, and I’ve not explained it, as a “them and us” thing and I can’t understand why I would.

When it comes to neurological differences, much like physical differences, all I strive for is for my boys to accept, respect, and allow for other people’s differences. To work with people’s differences, not against them. To recognise their own strengths and weaknesses and how they may differ to others. To be able to say to another person “I can see you’re struggling with this, how can I help?” with an understanding of WHY the person is struggling but without making them feel like it’s a something they should be ashamed of. Because, after all, different is just….different. It’s not better or worse.

And that’s why I’m struggling with the idea that the world needs to change for just one group of people, and not for everyone. What’s the point in making the neurotypical community accept us if we can’t accept them in return? Why should they make all the adjustments? Now, arguably (and I said this to my boyfriend) I have been making adjustments for other people my entire life by masking, should I not be of the opinion that it’s their turn to adjust for me? No, I shouldn’t. It’s not that simple. We need to work together, meet somewhere in the middle where we can all be comfortable.

I understand that there is still a lot of misconceptions about autism, and therefore a lot of “but you don’t look autistic” style attitudes that some, understandably, refer to as ignorance. Or, in the case of ADHD, “everyone struggles to get things done sometimes, you just need to try harder”. This sort of advice is NOT helpful, I’ll admit. But in the same way we have some feminists shouting about how terrible all men are, I fear we could be heading the same way with some autistics shouting about how terrible all neurotypical people are. And that’s just not true. Or fair.

I think what I’m getting at is that there is SO much hate in this world. So many people just waiting for someone to slip up so they can publicly shame them. So many people painting entire groups of people with a tainted brush based on the actions of only a few. So many people abusing and hurting others simply because they have a different opinion to them.

So when I say that the world needs to change, I mean we need less hate. We need less judgement. Less greed. The world needs to change for our kids who are growing up in a social media and “like” fuelled world that scares the shit out of me. There are plenty of people already trying to make these changes. But there are so many people making this world a more difficult place. Trying to force their opinions on others, and shaming those who don’t agree.

We need to show our kids our differences. Whether that’s physical and obvious, or neurological and therefore more hidden. We need to let them see our differences and learn from them. Respect them. Make friends with them. Listen to each others stories to help understand each other. And that means the minorities, in my case the neurodivergent, listening to stories from the majority too. And I mean REALLY listen. Maybe, just maybe, we’ll realise we’re not THAT different after all.

So, yes, the world does need to change for us. Every single one of us. Not just some of us.

Unravelling

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…..

Why I am how I am…and I’m finally happy about it.

So while I was away from this blog, I realised something. It wasn’t a sudden realisation, as there had been hints towards this for years. It was like the flickering light finally started working and the lightbulb came on bright: I’m 99.9% sure I’m autistic. I strongly suspect ADHD/ADD is thrown in there too. I’m definitely neurodivergent. And since that lightbulb moment, everything (and I mean EVERYTHING) throughout my life has fallen into place in a “that’s why I did/said/thought/felt that” way.

I wasn’t sure whether to talk openly about this realisation. What if people judge me? What if they don’t believe me? Worse, what if they do believe me and treat me terribly as a result? What could it mean for future job prospects? My family? My relationships? It is scary writing this for those reasons. But then I realised those fears are exactly why I DO need to talk about it. And here’s why…..

Being autistic or neurodivergent isn’t a bad thing, and from where I’m stood autism has had a horribly inaccurate stigma attached to it which is not only unfair, but quite frankly insulting. A stigma that hinders access to correct diagnosis and support simply because you’ve been married or held down a job so “you couldn’t possibly be autistic”. A stigma that means your friends don’t believe you’re autistic because they’ve known a 12 year old autistic boy before and you’re nothing like that boy (being a 36 year old woman I’ve also never been like a 12 year old neurotypical boy, but never mind). A stigma that means a young girl (or indeed boy) can mask their struggles SO well that they’re refused an assessment and the parents are told to go on a parenting course to fix the “behavioural problems” they’re experiencing at home. A stigma that can cause people to doubt your basic abilities as a human being. And that stigma has to stop, so that those currently undiagnosed adults and children can get the correct diagnosis, support and understanding that they need, just like anyone else.

Being autistic doesn’t make me any less capable of being a good mum, friend, girlfriend etc. If anything, it makes me MORE capable because I understand my differences, and I have learned how important it is to accept people for who they are, not for who you want/expect them to be. I’m more understanding of my children’s emotional and sensory needs. I’m actually MORE patient with them than I was a few years ago. And my relationships have been formed without me hiding the parts of me that I’ve always felt ashamed of.

The biggest myth that I’ve read is that autistic people lack empathy. I expect this myth is one of the many reasons I never thought of the possibility that I’m autistic, because I’m an empath and I absorb emotions like a sponge. So I couldn’t possibly be autistic, could I? WRONG! It turns out that autistic people actually tend to have MORE empathy than most people, and the overload of it all can cause us to shut down and appear like we have none. Well, go figure. That’s my empathy explained in a nutshell. My empathy (and therefore my suspected autism) is a gift that makes me an amazing, kind, fun and loving mum, girlfriend, friend, sister, auntie and daughter (go me!).

I’m going to post something I wrote for another blog with more of my reasons for this discovery soon, but here are just a few more things I’ve realised over the last year or so:

– I’ve masked my entire life – even before I realised it was autism, I referred to my “anxiety mask” when going places and my mask coming off at home.

– I stim. All the time. I always have.

– I have sensory processing issues and have lived in sensory overload for most of my life.

– I have meltdowns. Though not so much anymore because I recognise the triggers and I’m more likely to go into a short shutdown instead.

– My executive functioning is terrible, it has been for as long as I can remember, and I’m slowly learning how to deal with this where I can and accept it where I need to.

– I’ve always suffered from “wrong planet syndrome” and not feeling like I belong anywhere.

– My anxiety has always been horrific as a result of all of this.

– I’ve taken all the recommended tests and scored high on them all, as well as sitting down with the diagnostic criteria and writing why I meet every single point (in other words, I’m not reading a few memes and diagnosing myself based on those!).

I can’t currently even begin to describe the relief I felt when it all fell into place. Joining Facebook groups of other autistic adults, where my experiences and quirks were no longer being met with “really?” and were now being met with “me too!”. Realising that it’s OK to self-diagnose or self-identify (whatever you want to call it) because the waiting list for assessment on the NHS is so long and I don’t have the money to go private. Personally, I want the assessment but I understand why some people can’t put themselves through it and choose to self-identify without taking it further.

Autism answers every “what’s wrong with me?” question I’ve ever had. And the answer, of course, is that there’s nothing wrong with me. I was made this way for a reason, and I am made just right. My brain is wired differently, but it’s also wired brilliantly.

So I guess you’ll be reading a lot more about autism and neurodiversity from me, alongside my usual parenting and mental health ramblings. I should probably do another re-introduction post at some point too, since I realise my original one is gone and some people will be reading this wondering who on earth I am. But that will have to be another time. For now, I am just me. No one special, but also someone special to a few. And someone who has finally, FINALLY, realised who she is.

ps – I’ve just found this and think it’s a great explanation for those new to thinking about neurodiversity. https://www.understood.org/en/friends-feelings/empowering-your-child/building-on-strengths/neurodiversity-what-you-need-to-know

Walls

I need to write. My head is FULL of thoughts and I want to write a “proper” first (again) blog post. But for some reason I can’t. My walls are up. So instead, I’m copying an old post I wrote for another blog, because it seems totally relevant…..

Walls.

I have so many invisible walls that no one else can see. They make pretty much every task I have to do so much harder. Sometimes these walls become visible to others, but they’re seen as laziness, anger, excuses. They’re not seen for what they truly are. A neurodiverse brain trying to scale what sometimes feel like impossible walls to get through life.

I have different walls. I have brick walls, glass walls, spiky walls, high walls, low walls, combinations of said walls and many others. On one side of these walls is me. On the other side of the walls are the things I need to do.

The first battle I often have is deciding which wall to try and conquer first. Sometimes this is more obvious than others.

First, there are the easier walls. These are the lower, brick walls. behind these walls are parenting tasks: mealtimes, bedtimes, school drop-off, pick up etc. My kids depend on me, and not only do I want to do all the things I need to do for them, I’m capable too. But that doesn’t mean these things are easy for me to “just get on with”. It still takes climbing over that mental wall before I can start the thing. It’s a fairly easy wall to get over, but it still takes extra energy.

Then the walls get more difficult and sometimes I simply can’t do a job, however obvious it is that I need to, until the wall comes down and lets me through. These are the high, glass walls, and are barriers to a lot of housework and self-care. Even getting out of bed in the morning can be blocked by one of these glass walls. I know I need to, and I actually WANT to, but I can’t until suddenly the wall is down and I’m up and out of bed wondering why the hell I found that so difficult. I can be sat in my armchair or stood in the kitchen looking at the mess that the room is in, knowing how much I need to tidy and how much better I’ll feel once it’s done. But I can’t. I’m reaching out and up and trying to hard to scale this glass wall to get over and be able to do the stuff, but I can’t. And this is where I can (understandably) be seen as being lazy. Like I can’t be bothered. Because people can’t see the glass wall, they can’t see the internal struggles I have to get over this wall. They see the mess. They see me seeing the mess. They see me not dealing with it. So they add the words “be bothered” to my “I can’t”. They tell me that because my friend can do it, I should be able to as well.

Just to confuse people, and myself, sometimes my walls change. What was behind a high glass wall yesterday may be behind a spiky wall today. For example, showering. I have a love/hate relationship with showering and this is probably why the walls change. Some days I just CAN’T because of the glass wall. I know I need to, but it is just NOT going to happen. Sometimes that glass wall will come down and I’m like “shower time!”, again wondering why on earth that was so bloody difficult. But sometimes the wall is spiky. Not too high, but spiky. This is when I know I need that shower but I really don’t feel like I can handle it because of the sensory issues of it all, but I kind of HAVE to battle the shower and so I slowly and painfully manage it. The worst part is that once I’m in the shower there’s often a second, usually spiky, wall that I have to deal with in order to get out of the shower. Because getting out of the shower is the worst part of the entire experience. The warm water to cold air, wet skin drying, wet hair down my back. Urgh. If I’m very lucky, sometimes the walls to get in and our of the shower are low, easy walls. This doesn’t happen often.

The walls aren’t there only for the things I HAVE to do. They really are there for everything, even the things I love doing. I had a wall to get over before I could start writing this. There are walls in front of the books I desperately want to read. I’m a bit of a homebody and don’t like going out all that much, but even when I do want to go out, say to a quiet beach, there’s a wall. There are walls stopping me from drawing, from learning new things.

There are social walls and these are the ones I quite often have to break through instead of climbing over. So if I’m in the school playground talking to you, making conversation appear easy, it’s because in my head there are fragments of broken wall around my feet. And I’m going to have to spend a lot of time putting that wall back together, otherwise the broken fragments will hurt me.

The problem is that a lot of people think these walls are a bad thing, and think I should be working to take these walls down for good. But a lot of these walls keep me safe. Yes, they can be a massive hindrance, but they’re part of who I am, and suggesting they’re bad makes me feel like I’M bad. Suggesting that I shouldn’t have these walls suggests that my brain is broken. But my brain is NOT broken. I don’t need the walls taken down. I need the tools to help me get over the walls more easily. I need the understanding that, some days, that wall just isn’t going to be conquered and that’s OK. Sometimes I might just need a helping hand getting over the wall. Sometimes I need someone cheering me on saying “you can do it”. Sometimes I need someone to look over the wall with me and say “fuck it, it can wait”.

My brain is not broken. My walls are there for a reason.

Starting again, again…..again?

I say starting again, but I dont even know where to start. A lot of people will see this as my first ever blog post because they didn’t know the blog before I took it down. Some people will remember Me, My Boys & I version one. And that makes it tricky working out quite how or where to begin. And this isn’t the first time I’ve started this blog again.

You see, things with the last version of my blog didn’t end so well and I’m here to ensure that doesn’t happen again. And so I’m trying to find the right balance between being open and honest about myself and my experiences while protecting other people’s privacy as much as possible. I also need to find that balance of positivity in what I write, without losing sense of reality. I’ve done it before so I know I can do it again.

I’m the same person I was when I was first writing my blog, but I’m in a very different place than I was, and a much better place at that. I hope that comes across in my posts. I love blogging as it’s like my therapy, and I know there are people who enjoy what I write and resonate with it. I’ve discovered SO much about myself over the last few years, stuff that literally makes all of my experiences fall into place and make me realise why I am the way I am, and why I LIKE the way I am. I’ve let go of almost all of my negativity, and any negativity that is left (let’s face it, we all have some) is not welcome in my writing. This blog is about the amazing experience that is my life, written in my own unique way with a side of honesty and humour. And I can’t wait to get started.