Hello my little demons,
This blog post is a little different today, and I know I said ‘self-diagnosing’, there’s a lot of issues surrounding self-diagnosing medical/psychological/neurological issues, but bare in with me…
I had Selective Mutism…
You may already know that I had Selective Mutism as a child. I haven’t been officially diagnosed with it, but I’m 100% sure I had it as a child (and still suffer slightly with it today – either I clam up and don’t talk, or someone says/does something that is a ‘trigger’ and sets off an anxiety attack). If you didn’t know, I recommend you read my blog post here and check out my very first video on my new YouTube channel here.
Now, the reason why I haven’t been diagnosed is simple… it was missed. Instead, I was thought to be ‘shy’ in school, which is true, I was shy. Painfully. But, I also believe it was missed because there wasn’t enough education into it back in the 90s and early 2000s when I was at school. And the reason why it hasn’t been diagnosed, or at least officially put on my medical records NOW is because of three reasons;
1. I only learnt about it recently, say in the last few years. I stumbled across it actually. I can’t remember where it was I first saw/heard about Selective Mutism, but something in the name made me think “can it be?”. Before then, I never knew it was a ‘thing’ – I thought I was different, special, ‘odd’, that I was the only one who suffered the way I did as a child. Then, one day I came across it, read up about it, and went, Oh. My. God. That’s a THING?! So, yeah!
2. I kinda grew out of it. I developed SM (Selective Mutism) when I was at Primary School (about the age of 4 or 5) and it got worse as I became a teenager through Secondary School. But when I went to college, I went to a completely different college than all my cohort at school so I was no longer around those kids that new me as The Girl Who Whispered and I managed to break the cycle – if I didn’t, I probably would be still suffering today.
3. I learnt to mask. It took me YEARS, but I learnt to mask, hide, pretend I didn’t have it and learnt to fake confidence around people. I was ashamed of having it. I was ashamed of what people would think about me if they found out how weird I was in school, that I didn’t talk, that I whispered. So, I would mask that I had it, to the point of pretending that part of my life didn’t exist. When people would reminisce over their school days and say how they wish they were in school still, I would disagree, saying I hated school, but never said why. It was also hard to explain why I have a fear of certain things – one for example, I HATE people whispering to me now, because that was one thing the bullies in school would do, but try explain that to someone that doesn’t know about your background and you don’t WANT them to know.
It’s not that I don’t want it on my record, I just haven’t yet had chance to really talk to the doctors about it. I struggle with talking to the doctors, not only because I have moved around a LOT over the last few years, but because I have had some very bad experiences in the past. Plus, with the whole Covid situation at the moment, I find it difficult to go to the doctors – I can’t just walk in and ask for an appointment and I’m absolutely TERRIBLE on the phone (I had recently had to email my new doctors surgery to ask for an appointment, but they have just emailed me back asking me to ring them – urgh! Need to find the courage to do that!)
Is this Autism…?
Which kinda brings me onto my own self-diagnosis of Autism…. because SM is a SIGN of Autism… especially in women. So, when I learnt that… I did some digging.
Firstly, I want to apologise if I say anything that may offend anyone, I am still new to Autism, I’m still trying to understand it and I may get things wrong, or may say something that isn’t politically correct. Please bare in with me, I mean no offense. I know at least that some people do not like to be defined by their autism, there is a difference between being ‘a person with autism’ and an ‘autistic person’. I’m new to this concept and am still trying to get my head around it. I will probably use these interchangable and I do not mean offense. I’m still unsure how to define myself – and if I should even be using the term undiagnosed.
Now, I knew about Autism, I’ve heard about it, I’ve seen it, but my understanding of it was HUGELY WRONG. So, yeah, I used to think there were a few things that I saw in myself, but I never really associated myself with Autism until very recently (in the last few weeks).
Another sign of Autism, I have recently found out is masking. Which I do! A LOT! And I didn’t/don’t even realise I do! Masking is the ability to mimic non-autistic traits, or social interaction to hide the fact you have Autism. I’ve heard this is more prevalent in women with Autism, as opposite to men. I used to say that because of my SM, I didn’t learn social skills, but I’m now starting to think that, yeah, the SM didn’t help matters, but actually, my social skills were actually a result of Autism. In fact, I didn’t even realise this was a thing until recently either, because I just thought “this is how we learn” to socialise. Nope, it’s just me, being different.
There are a few other signs/criteria for autism, and more specifically ones found in women, and I will break those down, focusing on the main ones for women, because I want to show you why I have decided to self-diagnose myself with autism…
I took the following list from a YouTuber (shout out to Dan @TheAspieWorld, thanks, dude!) which I will post the video down below for you to watch. He has been diagnosed with asperger’s (which is technically Autism, but that’s a whole other discussion that I personally do not 100% understand yet, so will refrain from saying anything and getting it wrong…)
Autism in Women
Lack Of Eye Contact
✔️ Yep. I used to HATE looking people in the eye. I felt it was too intrusive. I felt like I was staring. Being rude. I also felt uncomfortable when people would look at me too long too, so if I felt uncomfortable, I would think others would too. I wouldn’t know how long to look, do I glance to make them aware I know they’re there and talking to me? How long is too long until it becomes weird and awkward? But, I learnt that eye contact was a ‘typical’ thing to do – so I had to learn how to make and keep eye contact. Some days, though, if you catch me on a bad day, or I’m a little too intimidated by the person, I will struggle – One of my coping mechanisms for those days, I find something else to put my eyes on.
Also, I am an anxious person so I tend to be hyper-aware of my surroundings, and even if I’m not hyper-aware, I am easily distracted by sounds, sights, lights, smells, etc, so if I look like my eyes are darting to things like that… it might not be that I’m struggling to keep eye contact, just something shiny has caught my attention.
Difficulty Socialising
✔️ Yep. Difficulty starting conversations (I hate small talk) and keeping them going. Although, this isn’t always the case, if you start talking to me about something I am interested in, passionate about (I can talk for hours about my book, for example) then I can talk so fast, you wouldn’t be able to keep up. I also struggle to understand what is oversharing, what is undersharing, when to stop talking if I’m talking too much, when to ask for help, and what the correct ‘socially accepted’ response is. I used to get people asking me how I am… and I would answer truthfully (“I’m terrible today, I just had a bad day with…”) and apparently people aren’t actually interested in knowing how you are… apparently this is a typical ‘greeting’ for some people. So, I learnt to say (“I’m good, thanks, how are you?”).
Introverted Personality But Outgoing In General
✔️ Yep. I have said to a few people before I am introverted (I like my own company) but I LOVE going outside. Maybe not to bars, clubs, restaurants, etc. Because they can be too loud, or busy, or have too many people. But I love the outside/nature (as long as it’s not too cold, but that’s a story for another day!) I love going out somewhere new, taking my camera, exploring the sites, smells, sounds, etc. I do also prefer going out with people… usually just the odd one or two people that I get on with, as that tends to help with my confidence, but if it’s someone I don’t know well, I’m too worried about how to act around them that I don’t tend to enjoy myself too much.
Obsessive Collector
✔️ I feel personally attacked. Let me just hide my Pokemon collection… My postcard collection… And my collection of bad habits… okay, maybe not including in this category… But yeah, I have been and still am a collector… and a hoader. I also go through phases. I had a large collection of bouncy balls, keyrings, postcards (which I regret getting rid of), bugs (yep, I was that kid! Sorry, mum!), I even came back home from a holiday with a new collection of pretty shells at one point. Unfortunately, I either stupidly got rid of a load of stuff, was asked to get rid of stuff (i.e. moving house) or I lost interest in that thing (I mean, why bouncy balls? What was I going to do with them?) but I have always been one to collect things, to the point of obsession. Currently, I am obsessed with collecting Pokemon on my Pokemon Go app, recently re-started a Pokemon card collection and re-started my postcard collection too. I also, not sure if it’s really an obsessive collection as such, but I HAVE to get something as a memento from where I went – a little gift to myself from a holiday destination, postcard is a must of course, but maybe a painting, or an ornament, heck, even a stone! And LOTS of photos! I also hoard, I’m terrible for it… I don’t like throwing something out if it may be useful in some way – tin cans I can upcycle, jars to store things in, a pretty candy wrapper for no other reason but because it’s pretty – and then I throw away because it’s technically rubbish, ribbons that I think will be useful for something, somewhere, someday and left forgotten in a draw, buttons… because you never know when you’re going to need a bright purple button from a cardigan you had when you were twelve… birthday cards, old electronics because you might want to learn how it works or try to fix it… boxes… does a collection of unironed clothes also count, or is that just me being lazy and hating ironing?
Selective Mute
✔️ I have already mentioned this previously, so I don’t feel the need to expand too much on this one. It’s obvious this means Selective Mutism, right?
Masking To Meltdown
✔️ Now, what this one means, is that you mask so often, to the point of exhaustion and then something tips you and BOOM meltdown. If I had seen this without the context that Dan said in his video, I probably would have disagreed with this one. But when he mentioned about the meltdown over something simple like realising someone has eaten all the chocolate sauce and you couldn’t have ice-cream and chocolate sauce… yeah… I realised that was me too. I may be fine one day, have the ‘issue’ not bothering me (Oh, you’re going to replace it… okay, that’s fine!)… but if I’ve had a bad day, or I’m exhausted from masking in a social situation all day… I would have meltdowns over something minor. (IT’S THE END OF THE WORLD!) It could be from moving something I own. Breaking something. Eating my chocolate in the fridge. It could even be just asking me to do something simple. I can have a meltdown. And it physically hurts… I mean, seriously feels like an anxiety attack. It’ll also take me a while to calm down, and it’s seriously difficult to be around me because I can either get mad and angry, or I can turn the opposite and get depressed.
Shy And Quiet
✔️ This one is a yes and no answer. But only because I struggle to know whether I was actually shy, or if it’s my SM and/or social skills OR if it’s my masking, but I used to define myself as ‘shy and quiet’ but less so now because I have had to ‘force’ myself to be confident and outgoing to ‘fit in’ and be ‘professional’. It’s difficult, it’s exhausting, and there are times when I just cannot be bothered to be social as I’m so tired from it, so I will become quiet. But I’m not sure if the shy part actually defines me. I guess you could say I used to be, I am nervous in social situations, especially if I don’t know you or there is a big group or I’m put on the spot to talk (please make ice-breakers illegal!) but I feel as if that goes hand-in-hand with the selective mutism checkpoint.
So, yeah, reading through that, it makes me realise I hit all of those points. But, I want to point out there are others, some I agree with, such as the sensory overload issues – only today I had to move my feet from the floor of my flat because downstairs was making noises that was vibrating up through the floor. Inability to listen to people (I find it easier to read conversations/information than listen… it will seriously not go in!). Inability to express or understand emotions (well, there are some I understand such as anger or disgust, but others not so much – I’m really not good with knowing if someone is flirting!)
But, other points I don’t agree with; some Autistic people apparently are good with numbers, I’m not, I am TERRIBLE with numbers, my brain just cannot understand them, I’m terrible with dates of birth, for example (but I’m good at problem solving, I loved algebra in school and found statistics fascinating!). Some Autistic people have great memories, I haven’t, mine is terrible, remembering someone’s name, remembering what I did yesterday, apparently this is a trait from mental health issues too though. Some are geniuses, and yeah, I have a few qualifications, but I do not see myself up there on the genius scale at all – I had to fight to get my MSc, I nearly failed it!
I also, have heard that women with autism can be misdiagnosed with ADHD (or vise versa) and one of the traits in ADHD is the inability to stick to one task, having to do things all at once… that’s me too. I also get distracted easily, by something shiny, or something out of place, something wonky (my damn picture on the wall keeps moving, guys!) But I feel I relate more to Autism than I do ADHD, plus, if I don’t finish a task… I get nervous and frustrated. If I start a task, I have to finish it. It’s hard to let go.
Should I self-diagnose?
But, why have I self-diagnosed myself? Why did I decide in the last few weeks to just go ahead and start saying I am Autistic without getting officially diagnosed? Well, because it helps me. It helps me understand myself, it helps me try out the label and see how I feel about it, and it helps me explain to others about myself.
One of the things I have always struggled with is getting people to understand me. I remember writing about it in a diary I used to keep once, I was so upset that people didn’t understand me. I couldn’t understand why people struggled. I tried to explain myself all the time. Online. To people’s faces. I would write hand-written letters with all the intention of sending them and chickening out. It was EMOTIONAL. I was more upset about that, than actually keeping friends. And yes, that also upset me. It still does to some extent. I really struggle to make and mostly, keep friends. My MSc was torture for that reason and I ended up struggling with my mental health for a bit too. I also tried too hard to get people to like me, which I think put people off.
I recently spoke out on my Facebook profile, my personal one for my friends and family to see, that I am going through the process of diagnosing with Autism and a realisation hit me… if I get this diagnosis, will people finally accept me? Will they finally understand me? And oof… all the feels… I was emotional again!
I also came across another YouTuber (shout out to Paige Layle) who talks about self-diagnosing and explains why it’s okay to self-diagnose. You can watch it below too, I have included the video at the end of this blog. Yeah, okay, I live in a country with free health care – but believe me guys, it’s not all it’s cracked up to be! (That’s a whole other rant that I will not discuss here!) I will at least say that a lot of people have said it’s difficult to get diagnoses for these things here in the UK. It took me until 2010, when I was in my 20s to get diagnosed with depression (one counsellor even said I was just ‘having a bad day’ after one meeting!). It wasn’t until I moved to Scotland (about 25/26) that they did tests to see if I actually had thyroid issues or vitamin deficiency. Getting a diagnosis for Autism is going to be hard and I’m expecting to get misdiagnosed too!
So, although I am probably going to be referring myself as Autistic from now on, for these reasons I have mentioned, I am still going to push to get a diagnosis. To put my mind at rest – and to have it officially on my record in case I need any extra help in the future (ie. with work or education, which I feel would have benefitted me so much if I had that before!) AND, in the process, I hope my SM will also be diagnosed officially too.
Another thing I hope to get diagnosed is my Fibromyalgia. I’m 90% sure I have it now, as it’s getting worse, but that is also one other thing I have had trouble getting a diagnosis. Again, for my own peace of mind. But, this also is another story, possibly for another blog post!
Lastly, here are the videos I recommend you guys watching:
Dan @TheAspieWorld on the Female Autism Checklist:
Paige Layle’s Video on Self-Diagnosing:
I just want to point out, that although I personally have self-diagnosed myself with Autism on these above points, this isn’t a proper diagnosis, so please refrain from diagnosing yourself or someone else you may know, especially on just this one blog post. Please do your own research or, if it’s possible, seek professional advice. This blog post is only short in comparison to all the information out there, and all the research I have done, it’s only scratching the surface. This is only to inform you why I have done this in the limited space I have available on a blog post, and doesn’t give you the full picture. 🙂
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